Making Chromosomes Count

beautiful rooms SHOPPING IDEAS

A NOTE

From MCC

Oliver Hellowell

Denise Humberstone Editor in Chief Dear readers, Here we are, second edition in already, glowing with the warm welcome and wonderful feedback we have received following the first edition in January.

Dedicated as always to living up to our mission statement, “to showcase to the world the fascinating kaleidoscope that is Down syndrome and its community”, but definitely not tunnel-visioned by the meaning of “fascinating”.

We mean warts and all, not just the amazing and inspiring. We mean the good, the bad and the ugly, as reflected throughout our stories.

As you leaf through this magazine, gratitude will be jumping out of the pages.

Gratitude to pioneers such as Emily Perl Kingsley who paved the way for inclusion, GiGi’s Playhouse who started Down syndrome achievement centres, Zebedee who are fighting for full disability representation in the media and fashion industry; to front liners such as Special Needs Jungle and SENDIASS who help parents navigate overwhelming paperwork; to educators such as Teach Me Too on a national level and Down Syndrome International on a global level; to relatives such as siblings, grandparents, dads who never fail to protect,

He Doesn’t Just Take Pictures FEATURED ARTIST

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love and fiercely support, with a special mention to the Pinkerton family; to authors and directors who keep raising awareness and force us to have those difficult but necessary conversations; and to law disrupters such as Heidi Crowter.

A few other emotions are bound to hit you as well: outrage with Hazel’s and Cali’s diagnostic overshadowing stories; wonder with Down Syndrome Diary, and Oliver’s and Kathleen’s achievements; sadness with Tommy Pilling’s passing; and laughter with some home truths about Zoom schooling…

And as you’ve gone through it all, you will come to one realisation: There is still so much to do, so much to expose, so much to rejoice about. And we’ll be right here, shouting it all from the rooftops of MCC! Enjoy this issue, enjoy the summer, and see you in September!

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beautiful rooms SHOPPING IDEAS Issue 2 - May 2021

Published by Making Chromosomes Count

Stacey Byrne - Founder and Trustee Sandy Nasonte - Founder and Trustee Denise Humberstone - Trustee and Editor in Chief Janice Jencarelli Corrado - Managing Editor

22 Mongol

A powerful memoir in loving memory of Uuganaa’s son Billy, a Mongol with Down syndrome.

24 Epic Players

Making the Magic of Theatre Accessible to All

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Oliver’s dreams of becoming a published professional landscape and wildlife photographer have come true!

MCC Editors Amy J Hernandez, Hayley Newman Social Media Management

Oliver Hellowell: He Doesn’t Just Take Pictures, He is a Professional Photographer

30 Zebedee

A talent agency’s quest to turn 0.06% representation of people with disabilities into the 20% it ought to be.

Sarah Mayes MCC Admin

AMBASSADORS

Julie Helen Williams

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Proofreader Kathy Waghorn Magazine Design Jersey Girls Creative (New Jersey, USA)

Kathleen Humberstone

Globe-trotter, model, actor, UN guest speaker, bilingual 22-year-old young woman!

HEALTH 36

Cali Is 7 years Old, She Has Trisomy 18…

The high prenatal and postnatal death rates of babies with Patau syndrome and Edwards syndrome: Hard facts or self-fulfilling prophecy?

On the Cover Kathleen Humberstone Photo credit: Murat Ozkasim

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Diagnostic Overshadowing - Hazel’s Story

Always challenge diagnosis and prognosis when dealing with someone with a learning disability.

Table of Contents..

EDUCATION 42

FAMILY LIFE 4

The Pinkertons: Just an Extraordinary Family

Raising 6 adopted young men with a learning disability

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Becoming an Adult Sister’s Caregiver: One Family’s Story of Hope Tiffany steps up to welcome her adult sister Mallory into her own family.

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Oma’s and Pop Pop’s Take on Down Syndrome

Oma and Pop Pop reminisce.

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46 Teach Me Too

Initiative offering online videos and learning resources for free

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ARTS AND LEISURE

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A book about being a different sibling.

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20 Baking with Alfie

World Down Syndrome Day Cupcakes!

Starring winning best actor Steve Brandon: Injustice when dealing with loss.

Goodbye Tommy, until Death do us part indeed!

The Down Syndrome Diary: How Shared Heartfelt Stories Created a Global Family

A diary filled with stories from around the world!

20 The Unexpected Journey

21 My Feral Heart – Movie Review

An Overview of SENDIASS

A free, reliable resource for parents when trying to navigate SEN-related paperwork

A story of love, marriage, Covid, death, and grief...and Elvis!

19 I Love You Natty

Julie Fisher’s book about her son Darcy, from a prenatal diagnosis to the first teenage years.

Special Needs Jungle Clears the Way for Parents

COMMUNITY

14 Meet Emily Perl Kingsley, a Pioneer who Paved the Way for Inclusivity The woman behind Sesame Street and Welcome to Holland.

Zoom Schooling

What really does happen behind the screens…

The UK’s largest and most respected SEND platform

Being Dan’s Dad…

Mark reflects candidly on his 19-year journey of being a dad to Daniel

GiGi’s Playhouse

How does one woman create a chain of Down Down syndrome achievements centres offering result-driven programmes for individuals of all ages, FOR FREE?

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Down Syndrome International

A Down syndrome-related, global network of individuals and organisations with farreaching ripple-effects!

Heidi Crowter’s Court Case

Update on Heidi Crowter’s landmark case against the UK Government.

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by Amy D Hernandez (USA, blogger, mum of three)

I was not sure what to expect when I first interviewed Shannon Pinkerton, but I knew I was in for an epic conversation about adoption, Down syndrome, and what it means to be a family.

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non’s childhood, this is what they have always known, and hannon (49) and Troy (53) Pinkerton are raising six they are glad to help out. Shannon and Troy have adopted young men with a learning disability on adopted six young men: Joey, Tracee, Anthony, Julian and forty acres in Wyoming, U.S.A. Five of them have his brother Cameron, and Devlin. Marybeth also lives with Down syndrome, and one has dwarfism and other the family. special needs. They also look after Marybeth, 63, who has When Shannon was four, her parents took in MaDown syndrome. rybeth, then eighteen. Marybeth is now sixty-three and I interviewed Shannon over two phone calls. The has lived with Shannon’s own family for the past nineteen second call occurred during a bout with a stomach bug. years. Shannon describes Marybeth as “the princess” of All of us know the misery that brings to a household, so I the house who lets everyone know that she is the boss. thanked her profusely for even picking up the phone! Such All the Pinkerton children were fourteen or older is life when you have so many responsibilities. There is just when they were adopted and a few came from challenging no time to be sick. circumstances.

From the time she was very Joey is twenty-one. “He was young, Shannon grew up around from a young age, Shannon the first and youngest to be adopted people with disabilities as her mother was running a group home. knew she wanted to have at age ten. Cody, one of our biological sons, then aged nine years old, was Maybe that is why from a young her own child with Down actually the one who discovered him. age, Shannon knew she wanted syndrome Cody had a friend with Down synto have her own child with Down drome and now wanted a brother with syndrome later in life and was not Down syndrome, so he took it upon himself to find one! deterred by those who said she was crazy for feeling this Joey is the character of the house, always playing jokes on way. everyone! He is a great lover of Sponge Bod and Captain Troy and Shannon knew each other from school and America. He is also our lazy guy and spends more effort on lived just up the road from one another. When they were getting out of a chore than it would take to complete it!” first married, they worked in a men’s group home together. says Shannon.

Shannon, never forgetting her childhood wish, started Tracee, 24, was next to be adopted when he was sixlooking into fostering and adoption, and Troy agreed to teen . Tracee had been living in an institution where he was jump in with both feet.

Moving to Wyoming from Southern California almost chained to a table! Tracee is non-verbal and is autistic but twenty years ago gave the Pinkertons the space they would now gets his point across through gestures and dancing, which he loves! He also needs his beads at all times! need for their large family. They have now fostered over Anthony, 22, was lucky to have a loving foster family thirty children, most of whom have been reunited with their when the Pinkertons discovered him at the age of fifteen. families.

He has many nicknames: “Mr Clean” and “Hall Monitor” beThe Pinkertons have two biological sons and two ing two of them because he loves things clean and orderly. biological daughters, all of whom are now adults and live nearby. Their biological children are helpful and give their parents respite, though it is mostly a case of big siblings taking an interest in their younger siblings. As with Shan-

The Pinkertons: Just an Extraordinary Family Marybeth, Anthony, Joey, Cameron, Julian and Tracee 4

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Julian

Anthony

Mary

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eron

Cam

Joey

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Devli

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craves spending time with the others. Devlin is fifteen.

Punishment for Anthony is taking away his cleaning The pandemic has presented a few challenges for supplies. The best thing is that Mum and Dad never need to their family, as with any other. Being in a big state with a worry when they go out on their own: What happens at the small population like Wyoming, however, has its advantagPinkertons never stays at the Pinkertons, Anthony always es. Social distancing is inevitable in the wide, open space. makes sure of that; he invariably provides them with a very The first few weeks and months of lockdown were detailed verbal account about everything and everyone filled with dance parties, Zoom get-togethers, and Tikupon their return, including the sitter minding them. I think Tok videos. Shannon genuinely enjoys having the kids we all need an Anthony in our lives, don’t we? What a around, and was not overly stressed at all the famfantastic roommate! ily time. The kids have now been back at school Julian, 17, and Cameron (their only The since September. adopted son who doesn’ have Down first few weeks In case you think Shannon is a supersyndrome, has dwarfism, is legally blind woman who never seems to need a break, and medically fragile), 21, are biologiand months of lockshe says that having so much support cal brothers who had been separated down were filled from her mom, husband, and older kids in the care system. The National Down get her through; though she will not turn Syndrome Adoption Network (NDSAN), with dance parties, down a mani/pedi. Husband, Troy, helps which is the agency the Pinkertons Zoom get-togethers, as much as he can with their children have used, made a plea on Cameron’s when he is not busy as a farrier or working behalf that he be adopted along with Juand TikTok outside the home at a coal mine where he is lian, and of course, the Pinkertons agreed. videos. a drag line operator.

Cameron was sixteen, Julian was fourteen.

As a family, the Pinkertons love to travel, Julian loves to be outside, ride horses visiting family in California, going to Disneyland, and and wrestle. Cameron loves movies and is the camping in Wyoming. This year, in addition to their family self-professed world’s biggest Scooby Doo fan. Camtrips, Shannon and Troy will take their first ever ( and much eron is also known to break into song at the drop of a hat. deserved!) solo trip to celebrate their thirtieth wedding Devlin, their youngest child and most recent adopanniversary. tee (October 2020) came from an institution. Because of Closer to home, the kids love riding horses with their this, he has had to learn what it means to be in a family dad, which has the added benefit of addressing their core and move past the institutional mindset such as a lack of strength, which can be an issue for individuals with Down personal space, boundary issues, and having much more syndrome. freedom than he was used to. It has taken some time, but he is blooming into a loving member of the family who

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The whole Pinkerton family

fessed Mama Bear when it comes to her children, and their The Pinkertons have also become somewhat of a education is no exception.

TikTok sensation with over 533,000 followers! Their interThe one message Shannon wants to get out to est in TikTok came from Cameron wanting to connect with people is that they are not a special family. Their children people in his past. Though Shannon was fearful of the exposure to hate that her kids would surely be subjected to, needed homes and they were willing and able to provide one. They are just a family, like any other. It’s not all roses she knew that it was age-appropriate for Cameron to have and fairy dust. After all, people with Down it. As for the haters, they have I am struck by their genuine syndrome are NOT happy all the time. They learned to address them with kindlove and care for one another are human, and this is a very human famness, humour and an occasional, ily.

“Bye! You’re blocked!”. Cameron and for Shannon and Troy’s One look at their social media has taken to replying to any mean sheer devotion to kids who presence, and you understand this. There messages directly, which is empowotherwise might not have the are videos of the kids wrestling, cooking, ering for him. They have also found cleaning, horsing around (with and without a community that is quick to jump opportunity to know what horses!), the occasional argument and the to their defence, for which they are living in a family is like general mayhem that comes from being grateful! together.

Shannon has found TikTok useful for spreading I am struck by their genuine love and care for one adoption awareness, and has gotten over her initial trepianother and for Shannon and Troy’s sheer devotion to dation regarding the platform, though she is quick to shut down any haters, with help from Cameron and her daughter kids who otherwise might not have had the opportunity to know what living in a family is like; with all the stuff that Haley. comes with it, good and bad.

I cannot help but think that their visibility in a rural, small town, does wonders for the Down syndrome community in general. Small towns are not typically known Take a moment to follow the Pinkertons on for inclusivity, but with so many Pinkertons they have had Facebook and TikTok, and you will see what no choice but to embrace them. The family is popular in church and in local restaurants. The kids and young adults I mean. Facebook: Pinkerton Boys Advenhave also been supported well in school, though in Shantures TikTok: @pinkertonboysadventures non’s words: “They had no choice”. Shannon is a self-pro6

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Becoming an Adult Sister’s Caregiver

By Janice Corrado (USA, mum, educator, advocate for diversity)

Tiffany McDowell was a busy wife and mother of three daughters when she received devastating news: Her beloved mother had been diagnosed with terminal breast cancer. Tiffany’s sister Mallory had lived her entire life in her mother’s care, and suddenly her family was left to figure out how to navigate life without her. Though Tiffany had a lot to learn, she was determined to provide the best possible life for Mallory. Tiffany shares what she has learnt along the way and how together she and Mallory created their business, Mallory Paige Designs.

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iffany McDowell loved her little sister Mallory from the moment she laid eyes on her. “I felt like my parents had brought Mallory home just for me, like she was my special gift after so many years of living with four brothers,” Tiffany recalls. The two girls remained close all through their years at school.

Mallory loved to accompany Tiffany as the older sister shopped for clothes, got her hair and nails done, or prepared for special date nights with her boyfriend (now husband) JJ. Even after Tiffany and JJ married and moved into their own home, Tiffany and Mallory would have “girls’ night” at their mom’s house each weekend, where they would fix their favourite snacks, watch their favourite movies, and stay up way too late enjoying each other’s company.

“I knew my mom did a lot to help Mallory, but until she was gone and I had to take over, I hadn’t realised how truly difficult that could be.”

Although Tiffany and JJ had always known they would become Mallory’s caregivers, they never expected that it would happen so soon. “Our mom died at the age of fifty-three when Mallory was a senior in high school,” Tiffany says. “Luckily, because we had been close all along, having Mallory move in with us went very smoothly. JJ and our three girls welcomed Mallory with open arms, and Mallory really enjoyed being a part of our household from the start.”

ment with the Department of Vocational Rehabilitation, I felt so defeated! I knew nothing about how the system worked, and I wasn’t at all impressed with what was offered for my sister,” Tiffany remembers.

Tiffany was determined to provide something better for Mallory.

Initially, she enrolled Mallory in a day programme that promised to help her develop employment skills. The programme was so expensive that Mallory had to hand over her entire Social Security Disability Income (SSDI) cheque each month to cover the programme cost. “I honestly wasn’t seeing the progress that I thought Mallory was capable of, and this programme was costing her everything, leaving her no opportunity to save any money,” Tiffany recalls. “That was the moment I realised I needed to educate myself in order to effectively advocate for Mallory to help her achieve a meaningful and fulfilling life.”

Transition to Adult Services As is the practice in the United States, Mallory remained at her high school in a postgraduate programme until she turned twenty years old.

At that point, Tiffany was faced with having to help Mallory navigate the world of adult services.

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Through her research, Tiffany learnt that the State of North Carolina had approved a bill to create the ABLE Access initiative — Achieving a Better Life Experience — which allows adults with disabilities to save up to $15,000 per year in a tax-free account without affecting their SSDI. Fortunately, Tiffany discovered a new adult transition programme nearby called Wild & Free at the ARC of High Point, NC, created specifically for people like Mallory looking to set goals and achieve a fulfilling life experience.

Those in the Wild & Free programme meet up to five days a week to work on individual goals based on members’ interests, their skills, and the training required to meet those goals. In addition, programme members develop important life skills that benefit the entire community. “Wild & Free members have created a community garden that provides food, they have chickens who produce eggs, and they are looking forward to the arrival of a new bunny,” Tiffany says.

“They also learn about their rights and responsibilities as members of the community and of society, addressing real issues that they will need to understand in order to succeed in the world.” Because the programme is subsidised, the

cost is $35 per day, a much more reasonable rate than the ‘adult day care’ programme that had taken Mallory’s entire monthly income. “Without this programme, chances are that Mallory would be forced to live in poverty and without any hope of learning how to navigate society,” Tiffany says.

“We are so thankful she is able to be a part of it.”

Creating Mallory Paige Designs Shortly after the disheartening experience at Vocation Rehabilitation Services, Tiffany set her sights on helping Mallory set up a small business she could do at home to keep happy and busy on the weekends. “I thought, ‘Well, I’ve got a business degree and have been in sales my entire career, I know how to establish and market a business.

Let’s create a business that Mallory will love!’ So Mallory and I sat and thought about the things she loved to do and what we might work on together.”

Tiffany’s faith had always been important in her life, and she spent a great deal of time quietly seeking guidance. “Two words kept coming back to me,” she shares. “‘Inspire’ and ‘Empower.’ One evening, I happened to read

Mallory joined Tiffany and JJ’s family when she was a senior in high school. Tiffany shares, “The girls welcomed Mallory with open arms, and Mallory really enjoyed being a part of our household from the start.”

Facebook: @mallorypaigedesigns TikTok: mallorypaigedesigns (561K followers!)

Instagram: @mallorypaigedesigns Website: mallorypaigedesigns.com

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tions with Mallory, Tiffany worked out a daily itinerary one of my favourite Bible verses, ‘If you have faith the which Mallory continues to follow to this day. “It’s been size of a mustard seed, you will say to this mountain, nice to see just how independent Mallory has become,” “Move from here to there,” and it will move. Nothing will Tiffany says. “Each evening, she prepares her clothes for be impossible for you.’ And I knew then what it was that the next day and has come up with a system where she Mallory and I were destined to do. We wouldn’t be sellhas a ‘Monday outfit,’ a ‘Tuesday outfit,’ and so on, so she ing a product, we would be sharing HOPE. From there, we has a week’s worth of clothes lined up. So her mornings created the tagline, ‘Moving mountains for adults with are incredibly easy! Because we know that people with disabilities.’ We decided to create bracelets with mustard Down syndrome may have certain health concerns such seed charms that would offer hope to everyone, whether as heart issues and weight gain, Mallory makes sure to they are battling cancer as our mom did or need faith to eat a healthy breakfast and to pack a really healthy lunch face a mountain of their own. And that’s how Mallory for herself each morning. At home, we incorporate lots of Paige Designs was born.” dancing and movement throughout our day, just because Creating and selling their line of bracelets has led it’s fun!”

Tiffany and Mallory to share their Mallory also has a boyfriend, Stestory of hope with a wider audience “If you have faith phen, whom she met through speed datthan they ever thought possible. “We ing at a local coffee shop where Stephen started by making the bracelets over the size of a mustard worked. They celebrated their one-year weekends and selling them locally, seed, nothing will be “dating anniversary” on February 22, and then we discovered the power of although they had to do so virtually due social media,” Tiffany says. “Our goal impossible for you.” to Covid-19. “We see each other every now is to change the way everyone night at 7 p.m.,” Mallory says, “on the thinks about Down syndrome through iPad.” Stephen now has a job as a doorman, and the two our website and our videos. Mallory and I have an amazplan to marry in the future. “I’m so happy that Mallory has ing, incredible life, and we want everyone to know that it found someone she wants to spend her life with,” Tiffany is possible for them to have that too. I sometimes think says. “We could all take advice from Mallory. Although that maybe there is a fourteen-year-old girl who sees one she didn’t meet Stephen until the age of thirty, she never of our videos or receives one of our bracelets; in ten years’ wasted her time on a boy who made her cry. She went time, maybe she will learn that she is carrying a baby with from zero to perfection on the first try!”

Down syndrome, and she’ll think back on our story and As delighted as Tiffany is to see Mallory and Sterealise that anything is possible.” phen so happily planning a future together, she knows that this next transition for Mallory will also need to be Mallory’s Life Today thought through and planned for. “Now I’m again asking One area where Tiffany had to do some adjusting in myself, ‘How will we make this work? What happens after her family’s daily life was in terms of providing a schedthe wedding? What resources are out there to help us plan ule for Mallory that would help her become independent. this next stage of Mallory’s life?’” Given their faith and “Here’s where being a sibling caregiver differs from being Mallory’s successful transition, the sisters have confidence a mom,” Tiffany smiles. “I had to structure Mallory’s day that great things lie ahead. “We know from our own exso that it provided enough challenge while at the same perience: When you open your heart and share your love, time allowing Mallory to take responsibility where she you will continually be amazed at all that life has to offer,” could.” Since Tiffany and her husband both work from Tiffany says. “‘If you have faith the size of a mustard seed, home, they needed to have some quiet time to devote to nothing will be impossible for you.’” their businesses. Based on her observations and interacmakingchromosomescount.co.uk

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Oma’s and Pop Pop’s Take on Down Syndrome

By Lauren Maehrlein and Thomas Dietrich (USA, Charles’s grandparents)

It is no surprise that Oma and Pop Pop remember exactly how they felt when they were told their unborn grandchild had Down syndrome and where they were when he was born.

Oma’s account:

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hen Amy told us that her unborn baby had a heart defect, we were upset and anxious. When she said it was most likely caused by Down syndrome, we couldn’t understand how that could be possible. Amy was twenty-nine – certainly not the forty-plus-year-old mom you generally think of having a baby with Down syndrome. When the diagnosis was confirmed, we realised it was just the luck of the draw and that there would be challenges ahead. There was nothing we could do, but just wait and see. We listened for any news on his development and prayed for the best outcome possible.

It was a Sunday. Tom and I were in church when I suddenly knew that Charles had been born. This was confirmed a short time later, and we were thrilled to know that he and his mom were okay. Charles needed special care because of his severe heart problems, but right then, we were just happy to know he’d arrived. Charles would never have a time when he was completely okay, medically. Before his first heart surgery, he would be given oxygen and need a feeding tube, but he really was okay! He seemed happy to be here! He was the smiliest, most joyous baby.

We travelled the eight hundred miles to meet him as soon as possible.

We were in love with him instantly, and, as he grew, we loved him more. We knew he would have challenges and that he faced ongoing problems, particularly because of his heart, but he was just our beloved grandson, our “Charlie boy!”

As time went on, he gravitated to Pop Pop. They had a special bond early on, and to this day, he’ll talk a little to Oma, but it’s Pop that he wants to hang with. Communicat-

ing with Charles, however, has been a struggle. Too often, we don’t understand what he’s trying to tell us. It’s frustrating for us, but it must be many times more frustrating for Charles. Because we live a considerable distance away, we didn’t see him often enough to develop an ear for his speech patterns. But with a lot of patience and some family help, we manage.

One of our favourite memories of Charles as a little guy was how in-tune he and his younger brother, Evan, were. They were close enough in age (ten months, twentyeight days apart) to have an almost twin-like connection and little Evan, even at two years old, often was Charles’s voice. The symbiosis continued through their childhood.

When Charles started school, we were unsure how far he could go academically. We weren’t there for the day-to-day struggles of schoolwork, but thanks to his own abilities and his parents’ dedication and love, he flourished. The big question early on was whether he could learn to read. Knowing that few opportunities would be available to him if he couldn’t, we prayed from afar that reading would not be an impossible goal. Our hopes were rewarded – Charles is a reader!

Charles is a profile in courage for all of us. Despite his health problems, he perseveres. Weightlifting, bowling, swimming, driving Pop’s boat on the lake, he keeps plugging along. This last year, with its restrictions, has limited our opportunities to see Charles and for him to get out and about. Online classes have kept him in touch with school friends and teachers, but the isolation it has caused must be particularly hard on our Charles. We managed to get in a socially distanced visit in late summer as we trailered our way across the country, but it wasn’t enough. We’re looking forward to everyone being vaccinated by next summer and finally being able to gather again.

We were in love with him instantly, and, as he grew, we loved him more.

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arts and LEISURE

Pop Pop’s account:

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hen I learnt that my yet-to-be-born second grandson had Down syndrome, I was moved almost to tears. I knew next to nothing about it, only that life for my daughter, son-in-law, first grandson and, of course, Charles was going to be different from what it would have been had Charles not had Down syndrome.

It’s difficult living far from your family. Amy and Danny lived just outside of Chicago, while we and our two younger children lived just outside New York. We were young for grandparents, not yet fifty. Both still working. Retirement wasn’t even on the horizon. Fortunately, Danny’s family was nearby, so Amy and Danny weren’t completely on their own. Of course, we visited as soon as possible.

My first memory of Charles is him on a blanket on the living room floor. It wasn’t hard to look past his Down syndrome, this cute baby boy lying on his back, arms and legs moving around, his head turning and checking out the world. My poor little guy also had a heart defect. He would have open-heart surgery while still an infant, and again, a few years later. That seems to have done the trick.

Charles loves to do all the things that others do. I’m so thankful for the Special Olympics. Sadly, I rarely get to see him participate, because we live so far away. Even so,

we have a special relationship. Charles is great with animals, especially cats; he loves to drive the boat – under intense supervision. In many ways, Charles is pretty smart; he usually figures out “computer stuff”.

Charles’s Oma and I took him on a camping trip to Michigan a couple of years ago. He had a great time. We struck up a conversation with a Mennonite couple, and, as we said goodbye, Charles gave the man a big hug. I was a bit uncertain about travelling with Charles because his disability, but there weren’t any problems. Charles’s life could be so much fuller, even happier, perhaps, if only his speech could be better understood. One real heartbreaker about my Charlie Man is that he fully understands that he is “different”, and he feels any rejections deeply.

It wasn’t hard to look past his Down syndrome

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I have to let him live his own life, let him make his own choices and hope that my influence as a dad has helped him make the right life choices.

Mark and Dan

Being Dan’s Dad…

By Mark Jones (UK, dad of 2, advocate)

Mark Jones and his family live in Gloucestershire, UK. He tells us a little bit about what it’s been like to be Dan’s dad so far.

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honestly had very limited knowledge of people with Down syndrome before Dan came into our world.

I have a vague memory of a neighbour with Down syndrome when I was very young, and my parents spoke very fondly of her. That’s about it!

Fast forward twenty years. I turned thirty years old five days after Dan was born, and my wife Karena was twenty-three. We married in 2001, and Dan was born around a year later. We were stunned by the postnatal diagnosis.

However, I think it had a lot to do with how the news was delivered, and in our case, it was broken very sombrely and made us feel very sad. We were sat down and handed a Polaroid photograph of Dan in the Special Care Baby Unit. We thought the worst; we thought we’d lost him. We were then told the “sad news” that Dan had Down syndrome. We had no idea until that very moment. We had no prenatal testing; this is something we hadn’t considered at all. If we had, I’d like to think we would have had the right information and support to make the decision to go

ahead with the pregnancy. Honest and balanced advice at the point of diagnosis is extremely important.

It so happened that Down syndrome was not the only diagnosis. Daniel had a severe bowel problem that needed emergency surgery, and we naturally prioritised that. In a way, the worry of the surgery put it all into perspective for us.

My instant concerns at the beginning were: Would we be able to give him the best life? Would he be able to make his own choices? Would he have friends? All of these worries faded pretty quickly. He loves discos, his local football team, and he definitely has more friends than I do!

I had an early selfish vision of what a father–son relationship should look like when Dan was born. I pictured him playing football, watching Star Wars with me, liking my taste in music. The truth is, Dan has more than embraced his own likes and interests. I have definitely gone from wanting my child to like the things I like to fiercely wanting him to do whatever makes him happy and for him to make his own

I am his voice, and I will continue to be his voice until he finds his own.

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family Life

choices. I have to let him live his own life, let him make his own choices, and hope that my influence as a dad has helped him make the right life choices, just as I hope the same for my very mainstream daughter Eve, who is sixteen years old.

Incidentally, Eve is a fabulous artist and is on the verge of finishing her GCSEs in secondary school. So she is currently busy making life choices of her own as well. She’s a wonderful sibling for Dan. I feel that having him in the family has really influenced Eve to be patient, kind and very compassionate – all great attributes for her future.

Of course, our Down syndrome journey may be different to other families who have a child with Down syndrome.

When Dan started experiencing speech regression in 2012, when he was eleven years old, it prompted a lot of questions from us. Why was this happening? An autism spectrum disorder (ASD) diagnosis in 2019 (I know, right? Seven years later!) finally confirmed what we suspected all along due to his social and personality traits. If only health professionals listened to and heard better what parents have to say about their child.

The advantage of obtaining a professional ASD diagnosis is that we can now request that an adequate plan be put in place for Dan, one that will take into consideration his challenges and reflect Dan’s aspirations and future needs.

We are currently in the middle of discussing with Dan what he wants in adulthood. He’s already made it abundantly clear that he doesn’t want to stay in education, so we’re working on a plan for that. He loves cooking, and therefore we’re hoping he can go into catering. We just want him to be happy.

I am his voice, and I will continue to be his voice until he finds his own. In the meantime, Dan drives me to do whatever I can. He can take over the reins when his communication skills are back!

The value of a loving father has no price.

Michael and Evan Williams

Izzy and Stuart Mayes

[Mark Jones has been advocating for the Down syndrome community since 2012, creating designs to raise awareness for World Down Syndrome Day (21 March), anything from proposals for Google Doodles to badges, line arts for window displays and Facebook frames. He even designed the Down Syndrome Diary logo.]

Abdul Koddus and Musa

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Meet Emily Perl Kingsley, a Pioneer who Paved the Way for Inclusivity

As expectant parents, we can never know what the potential of our child might be.

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By Janice Corrado (USA, mum, educator, advocate for diversity)

Emily and Jason

Jason

When Emily Perl Kingsley’s son, Jason, was born forty-six years ago, she made a promise to help him live life to the fullest. Along the way, she changed how the world views people with disabilities.

Emily shares with our readers the challenges she faced as a specialneeds parent in the mid-1970s, how her role as a writer on Sesame Street helped open the world of disability to others, the ways in which early intervention and parent support groups helped improve the lives of generations of children with special needs, and the story behind her well-known essay Welcome to Holland.

When Emily Kingsley arrived at the hospital in the first stages of labour, she was as prepared as any firsttime mother could be to welcome her “perfect” child. After an eighteen-hour labour, her baby boy, Jason, was born at 11.00 p.m. After the delivery, Emily fell asleep, exhausted, without having spent any time with Jason.

The next morning, Emily’s husband, Charles, met with the obstetrician. The doctor explained that tests had indicated that their new son was born with Down syndrome. This meant, he said, that the child would be “permanently, severely mentally retarded.” The doctor’s recommendation, common at that time, was that Emily and Charles should never see their baby, never get to know him and send him, immediately, to a state institution for the rest of his life. “You will never have to know if he is alive or dead,” the doctor advised.

“Just go home and tell your friends and family that the baby died in childbirth.”

The Kingsleys had never considered the possibility that their child might be born with special needs.

“Jason’s diagnosis came as a 100 per cent shock,” Emily recalls. “We had not chosen to have an amniocentesis, as there were reported risks associated with the procedure in its early stages. I had spent no time preparing to be the mother of a child with Down syndrome,” Emily says. “I was expecting to have a regular, ordinary child, just like everyone else.”

In Emily’s heart, she knew that she and Charles would never relinquish the care of their son to an institution.

“I had majored in psychology in college, but I had only ever had one field trip to a place called Letchworth Village, a huge, horrible, depressing state institution. And oh, my goodness, I knew that I could never accept that life for our child,” Emily shared. Although they were terrified, with the doctor’s prediction ringing in their ears, she and Charles were willing to try and see what would happen if they raised Jason in their home.

Starting at Less Than Zero

Charles n with his dad

Jaso

arts and LEISURE

the parents of a child born with Down syndrome. “Not a paper, not a brochure, nothing to point the way,” as Emily remembers. “We knew that we were truly on our own.” On the third day of Emily’s hospital stay, a social worker suggested that there was something very new, very experimental, called early intervention. Some people believed that if you gave a child a very enriched environment, lots of stimulation and education, he might develop some fundamental life skills. Maybe he could be taught to feed himself. Did the Kingsleys want to give it a try? They decided they did.

Emily and Charles found an early intervention programme headed by Dr Margaret Giannini and took Jason there when he was ten days old. Dr Giannini took Jason in her arms, held him up high in the air, and declared, “He is going to be fabulous!” How could that be? But Dr Giannini’s enthusiasm inspired Emily and Charles to nervously make the tentative decision to give the programme a try and see what might be accomplished.

Creating Jason’s Home Workshop: Film Canisters and Red Jell-O Dr Giannini encouraged Emily and Charles to surround Jason with all sorts of stimulation. “Down came all the gentle-coloured nursery decorations, the pastel crib sheets and the peaceful pictures and the soothing mobiles of lambs and bunnies,” Emily recalls. Up went the bright, flowered wallpaper with red, blue, green, and yellow oversized blossoms. Emily filled Jason’s room with colour, texture, three mobiles, and nonstop music.

Emily talked with Jason every day, on and on, about the big, beautiful red flowers on the wallpaper next to his changing table. “Then one day, about four months later, I said, ‘Look at the big red flower!’ And Jason looked at me very intently and stuck his hand right onto the red flower on the wallpaper.

And boom! I knew that he understood what I was saying! He made the connection… he could learn!” Emily said.

Emily and Charles were lost, nervous, with nothing to go on. The hospital offered little support of any kind for

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Over time, the Kingsley’s home repertoire of sensory toys and techniques grew exponentially. “We tried it all — the film canisters filled with pennies and jingle bells for Jason to rattle and shake, the huge blocks of foam sculpted into all sizes and shapes for him to climb onto, the tunnels and tents to encourage him to crawl inside and search for hidden treasures,” Emily says. As she watched Jason engage with all of these things, Emily’s enthusiasm and creativity blossomed. “It was apparent to me that Jason was bright and that he loved to learn,” she says. “So I was excited to provide those new experiences for him every day.”

Finding Friends: Establishing a Parent Support Group One day, as she looked through the local Pennysaver newspaper, Emily noticed an ad. “‘Parents of kids with Down syndrome children meet at Prudential Bank on the first Monday of the month,’ it said. ‘There are others!’ I yelled out to Charles. That was our first contact with other parents. We thought we were the only ones on the planet. And this was the beginning of the concept of parent support groups,” Emily says.

“We moms got ourselves together as a group and made a lovely brochure, including all of the information that was available at the time about Down syndrome — all the things we wished we had been told when we had given birth,” Emily says. “We hand-delivered that brochure to the maternity department of every hospital in the area so that no other parent would feel as alone and helpless as we had.” The brochure included contact details so that new families could talk directly to the Kingsleys and other families to get real-life information and to know that they were part of a caring community.

The group got to know every new family as their babies were born, and a wonderful community of support and friendship grew. Friendships developed not only among the parents but among the children too. “Once our children became teenagers, we came to realise that “inclusion” might be happening in the classroom, but it wasn’t necessarily extending beyond the classroom walls,” Emily points out. “We started to see that our children weren’t being included in the soccer games or invited to the birthday parties or the sleepovers. So we set about creating our own parties, once a month, to give our kids the same opportunities to socialise and have fun.”

Their gatherings had such a lasting impact that today, Jason, at forty-six years old, shares a home with two of his friends from that original group.

“They’ve known each other nearly their whole lives,” Emily says, “so they are extraordinarily close.” In fact, Jason and his roommates refer to one another as “a family”.

Making Their Way to Sesame Street: Showcasing Inclusion Even at a very young age, Jason loved looking at and listening to books. He showed great interest in letters and sounds and in learning the alphabet.

He loved playing with Scrabble tiles. By the time he was three, he was able to identify the letters, connect them with a letter sound and say a word starting with that letter. It was apparent he was going to be able to learn to read. “We started visiting medical schools, nursing schools, universities, to attack people’s preconceived notions about Down syndrome — to demonstrate that Jason was only three but was developing fundamental academic skills,” Emily remembers.

One day, Emily brought Jason to the Sesame Street studio, where she worked as a writer. “I took Jason over to the producers of Sesame Street and asked if we could feature him on the show to demonstrate that a little kid with Down syndrome could do academic material. They said, ‘Why not? Let’s try it.’ The response we got to Jason’s appearances on Sesame Street was just phenomenal! Families wrote and said, ‘I have a kid just like this! I’m going to work even harder to get him to read!’” Emily said. “We pointed out to the Sesame Street producers that a new generation of kids was no longer being hidden away, but they were growing up in families, in communities, in schools.

They deserved to be seen.”

In addition to Jason’s appearances on the show, Emily created scripts featuring people with many other disabilities, including those on crutches and with braces and in wheelchairs and those who were deaf.

The feedback was terrific. “One of our most popular episodes featured ‘A Workout in a Chair,’ for kids who wanted to exercise in their wheelchairs,” 16

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Emily recalls. “We cast a child who had spina bifida, and we asked him, ‘Does it make you sad when you see other kids who are running around, and dancing?’ And he said, ‘Well, yeah, sometimes it does, but with my chair, I can do almost anything they can do.’ And that was one of our most-loved episodes.”

Emily had an opportunity to write some segments for Christopher Reeve, a famous actor who had become paralysed as a result of a horseback riding accident. Among other things, Emily wanted to include Reeve’s son Will in the segment. Reeve resisted this idea but asked, “Why is it important to use Will in this bit?” Emily responded, “It’s important for our viewers to see that even people with extreme or significant disabilities have families who love them, really love them, and want to be out in the community with them.” Christopher called Emily the next day and agreed to have Will in the segment. In the completed episode, Will greets Christopher by jumping into his wheelchair with a big kiss, saying, “Hi, Dad!” and off they go with Big Bird and Zoe to the library. “It was a beautiful moment, demonstrating their beautiful ‘normal’ loving father-son relationship,” Emily says.

“Towards the end of the episode, Big Bird says to Chris, ‘Are you sad that sometimes you can’t do the things you used to do?’ Christopher answers, ‘Well, since my accident, there are many things I can’t do.

But with the help of my family (wink to Will) and friends, I can do lots and lots of wonderful things.’ And it was just so dear,” Emily recalls.

Emily has earned twenty-three Daytime Emmy Awards for her work on Sesame Street and has authored over twenty children’s books. In addition to Emily’s groundbreaking work in her forty-five years with Sesame Street, she also wrote an award-winning madefor-television movie about a middle-aged couple who have a son with Down syndrome, Kids Like These, which premiered on CBS in 1987.

What’s Ahead for the Community

a day in the LIFE

Emily recognises that advances in prenatal technology have resulted in major decisions for parents as they contemplate their options. “Prenatal diagnosis is much more accurate and is done much earlier nowadays,” she says. “People have more opportunities to make informed choices. But as expectant parents, we can never know what the potential of any child might be. If I had listened to that first doctor and sent Jason away, he would never have had the opportunities to live in a loving family, go to school and develop whatever his potential turned out to be. Every child should have that right. Jason has written one book and is in the process of writing another. He has appeared on television. And he’s a really nice person. He’s probably made more of a contribution to the world than a lot of neurotypical children. I’m proud that he’s my son.”

Emily does caution that prenatal testing has the potential for far-reaching implications.“I have heard that approximately 90 per cent of pregnancies diagnosed prenatally with Down syndrome are terminated. Tests are easy to come by, and results are almost instantaneous. Expectant parents may not be aware of what life with a child with Down syndrome actually is like, so they may be faced with making a decision in a bit of a vacuum. People making these important life decisions should be sure to do their homework, meet other families and see what children with Down syndrome are really like,” Emily says. “If a large number of babies diagnosed with Down syndrome are terminated, I worry about the reduction of funding and services available for the children that remain.”

In taking stock of the changes in the Down syndrome community over the past five decades, Emily is at a place where she can take a longer perspective. “Jason has accomplished a great many wonderful things in his life,” Emily shares, “but the only important thing is that he had the opportunity to develop HIS potential. Not all children will develop to the same level, but each child has the right to develop to that child’s best potential. Down syndrome is a disability, but each child will do better if provided with stimulation, education, and love.”

emilyperlkingsley.com arts and LEISURE

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Welcome To Holland

By Emily Perl Kingsley

©1987 by Emily Perl Kingsley. All rights reserved.

Reprinted by permission of the author.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this......

When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives.

You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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“When I originally wrote Welcome to Holland, in 1987, I was counselling a woman who, like me, had a baby born with Down syndrome. I was trying to express that although the journey is different and there are challenges, there are positive aspects to the new place. But it was important to recognise that the pain of the loss of the dream would always be there. For the rest of your life, you will never lose the pain of the loss of the dream, the experience you had planned for — but you need to be available to the positive, rewarding aspects of the new experiences as well.

“Years later, when the autism community was growing, they came across Welcome to Holland, and some people were very upset by it, as were some parents of children with Down syndrome. Many of them were not having a positive experience in parenting their children, and somehow the painful parts that are so essential to recognise were left out of some of the versions that were shared.

Alternate versions started appearing on the internet, Welcome to Bangladesh and Holland Schmolland, for example. I certainly understand that the experiences of other parents of kids with special needs may have been different from mine with Jason.

“But I am so gratified to know that Welcome to Holland has helped many, many families. That means the world to me.”

— Emily Perl Kingsley

in the COMMUNITY

“This book could be the start of friendship between siblings. I give it 99 stars! “ – Kate Powell (who has Down syndrome) from the Down’s Syndrome Association.

BE IN To WIN

A Copy of I LOVE YOU NATTY

I Love You Natty

for your chosen school, email details to mccnews@gmail.com

By Hayley Newman (UK, mum, blogger, author, speaker, and inclusion ambassador at Down Side Up linktr.ee/downssideup )

Inspired by Mia’s relationship with her little sister, I Love You Natty: A Sibling’s Introduction to Down’s Syndrome is a firm favourite with children and their parents everywhere.

I

n the early days after Natty was born, I wanted a bright, positive and realistic book to read with Mia that would explain why her baby sister needed to spend some extra time in hospital. I sought something that would prove the girls would have lots of fun together growing up as well as reassuring me of what lay ahead.

Years later, Mia’s notes and drawings became the backbone of such a book that we decided to create for others in our situation. I love you Natty is packed with love, gorgeous family photos, and stories as well as useful resources.

Mia has always been a creative soul, so when I found a heartfelt note left for her sister, along with delightful drawings of them both, I knew this was the perfect concept for a book that would help other families welcome a new baby with Trisomy 21 into their lives.

Once again, Mia was leading the way for me. The message read: “Natty, you are the best sister in the world and so important to me and if you weren’t in this world my life just wouldn’t be the same.”

Mia then answered guided questions to shape the content of the book. I added some factual information about Down syndrome and the early interventions that helped Natty reach her potential. The work was endorsed by key charities such as the Down’s Syndrome Association, Mencap and sibling support group

arts and LEISURE

Sibs UK. A talented friend took care of the design and print, and I Love You Natty was self-published a year later.

Now teenagers, both girls are thoughtful, kind, empathetic, and patient, in part because of their similarities and differences, not in spite of them. As contributor Dr Elizabeth Corcoran puts it: “As an adult, I can see how the relationship with my brother has been a ribbon through my life and its choices. Not because he told me who to become but because he helped me to know who I truly am.”

Having a sister with Down syndrome has helped shape who Mia has become but, as with any sibling, it hasn’t always been plain sailing. She has this advice for others: “It’s sometimes hard work being a brother or sister. Natty used to hide my things until I learnt to keep them in a place she couldn’t reach. Talk to your sibling to teach them about the world and tell them how you feel. Show them interesting things and use Makaton. Go for sleepovers with friends sometimes so you come home more patient.”

I Love You Natty has sold around the world and is adored by many who see themselves represented within the pages. It has been gifted to hospitals, schools, and libraries and even has a few celebrity owners! Most importantly, it is sowing the seeds of inclusion everywhere it goes and is just one of a whole range of current publications where Down syndrome is included naturally and positively. makingchromosomescount.co.uk

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BAKING WITH ALFIE You can follow me on #BakingWithAlfie

World Down Syndrome Day Cupcakes!

Makes 12 cupcakes.

Vanilla Cupcake Ingredients: 125g Self-raising flour 125g caster sugar

The Unexpected Journey

by Julie Fisher (Australia, mum of 3, author, advocate, speaker)

In her tell-all book, The Unexpected Journey, Julie Fisher reminisces the emotions she and her family felt around their son Darcy’s Down syndrome prenatal diagnosis, his birth, and their journey all the way to his teenage years. But mostly, her book is one of love, acceptance, celebration and myth busting.

I

had always wanted to write a book, and when the opportunity came knocking on my door, I decided it was my time to write about our journey with our gorgeous little boy.

It was a way to show people who Darcy was, and to answer questions many were too afraid to ask.

I share our journey through my eyes and tell people about the pregnancy, his birth, the early years, school, what he loves to do, the services we have used and the wonderful support we have had right from the beginning.

My book has been a wonderful journey in itself connecting me with some amazing people and disability groups who are also raising awareness and supporting families with children with Down syndrome.

Darcy and I have been connected with Celebrate T21, a wonderful organisation that arrange a beautiful book full of lovely photos of families. They also gift this book, along with other lovely items, to new families and their children. I have been very fortunate to be able to collaborate with Celebrate T21 and have The Unexpected Journey included in these packs. One of the comments I received was from a Mum saying how lovely it was to receive something for her to read and get a glimpse into what their lives were going to be like.

Last year, I launched The Unexpected Journey globally on Amazon and achieved Number 1 Best-Selling Author status.

This has allowed me to become involved with more disability groups that I will be working with in the future and share our story across a much larger platform.

My journey since publishing my book has been incredible and I am enjoying a new found role advocating and raising awareness, connecting with other groups doing the same and teaching the world about Darcy and his friends who live with Down syndrome.

I am currently working on my next book, and this is aimed at showing how important inclusion and acceptance are. I want people to know that everyone deserves a chance to shine and nobody should feel like they don’t belong and I want them to hear it from a Mum with experience on exactly how it feels when their child is made to feel excluded.

I love where my journey is taking me and my family, and I’m so glad Darcy chose us to do life with.

I wouldn’t change him for the world, but I am changing the world for him.

1/4 tsp bicarbonate of soda 125g soft unsalted butter (at room temperature) 2 large eggs 1 1/2 tbsp milk 1/4 tsp vanilla extract 1 tsp yellow food colouring gel paste 1 tsp blue food colouring gel paste

method: 1. Cream together the butter and sugar until pale and fluffy.

2. Add in both eggs and mix together until fully combined.

3. Sieve in flour and bicarbonate of soda.

4. Mix together until combined.

5. Mix vanilla extract into milk, pour into mixture, mix until just combined.

6. Divide the mixture equally between two bowls.

7. Add yellow gel paste into one bowl and blue gel paste into the other, stirring well until combined.

8. Line a 12 tin cupcake tray with paper cases.

9. Put one spoonful of yellow mixture into each case, followed by one spoonful of blue.

10. DO NOT STIR COLOURS TOGETHER! 11. The mixture should fill 2/3rds of the case.

12. Bake in preheated oven for 20–22 minutes

Vanilla Buttercream Ingredients: 200g softened unsalted butter (at room temperature) 450g icing sugar 2 tbsp milk 1 tsp vanilla extract Yellow and blue sprinkles/balls to decorate

method: 1. Beat the butter with an electric mixer at high speed for 10 minutes until pale and fluffy.

2. Sieve the icing sugar, add to the butter in two stages, starting at a slow speed until combined, then turn up to a high speed for 3 minutes, then repeat.

3. Mix milk and vanilla extract together, add to mixture, start at slow speed, increase to high speed.

4. Scrape down and around the sides of the bowl to ensure everything is mixed together, then beat together again for a couple of minutes.

5. You’re looking for a firm but not stiff consistency!

6. Spoon buttercream (or use a piping bag) over the cooled cupcakes.

7. Use yellow and blue sprinkles/balls over the top.

8. Finally, eat and enjoy, and if you’d like to, sell some to your friends and neighbours to raise funds for the Making Chromosomes Count Community News Magazine.

Find out more at : juliefisher.com.au 20

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arts and LEISURE

My Feral Heart – Review

By Ken Ross (Vice-Chair and trustee at Portsmouth Down Syndrome Association, producer, award-winning filmmaker, BAFTA Accessibility & Inclusion Patron)

My Feral Heart has already won fourteen international film awards, with Steven Brandon winning Best Actor at the National Film Awards, beating Daniel Radcliffe, Eddie Redmayne and Michael Fassbender, no less!

T

D

espite being born with a serious cardiac problem comparing circumstances and outcomes as they are intrinhe much-anticipated terrestrial screeningopen-heart of My that necessitated surgery at three entwined.

Feral Heart finally happened onold, BBC4 on 18 March months Oliver has spent his sically life blasting all Beautifully directed by Jane Gull and skilfully writ2021, to coincide with Down Syndrome Awareness into oblivion. predictions and expectations ten

by Duncan Week. It is available watch onafter BBChis iPlayer He wastoso poorly birthuntil that it was thought he Paveling, My Feral Heart has been pivotal in my own journey back into producing films and sharing the March 2022. Don’t miss it! might not survive long enough to reach his date for cardiac abilities of people with Down syndrome to a much wider Although the film has already been around for four surgery.

After sailing through that first challenge, though, audience. Iand was lucky enough to catch up with Duncan and years, this propulsion Oliver into the mainstream, having been other conditions then took on the numerous talk about what had inspired him to make this film; he says: largely viewed on SKYissues wherehe it was was assessed a 5-star rated film and as having and continued to surprise “I started volunteering for Mencap from the age of fouras a record-breaking “cinema on demand” release, means medics and educational professionals with his progress teen, and eventually moved into working with children and that a much larger audience thebarriers disability commudespitebeyond the many placed in his way. adults with learning disabilities. I met many people with nity are finally getting involved.

At the Down syndrome, but one boy in parThe well-deserved hype time of writticular, who I worked with for several around the film has largely been ing this article years, really stayed in my mind, and driven by Mark Kermode (chief2021, film in March I wanted to make some of this story critic for the Observer), who rated Oliver is about him. So many scenes came to it as one of the most twenty-four influential mind from Hills direct experience, but primarily I didn’t want to films of the decade. years old and lives with his family in the Blackdown make a “courtroom drama” about abuse, I wanted to tell a The film opens on with a Somerset/Devon scene of home life, whereHe enjoys the border. an interesting, story about Luke, a man with Down syndrome (played by Stephen fulfilling, and enjoyable life and is extremely proud of loss. all hisAbout twenty-five years ago, I saw a film called Le huitième Jour (The Eighth Day) starring Pascal Brandon), is quietly getting on with everyday life: shaving, achievements.

Duquenne, an actor with Down syndrome, and I thought, preparing breakfast for his mother Joan (played by the late Oliver’s biological father left when Oliver was six why not have an actor with Down syndrome as a lead role Eileen Pollock) and shopping. years old and chose to have no further contact with Oliver infor a film.

The When Joan dieswhen in herhe sleep, Luke’syears independence is was seven old. Fortunately Oliver, hefact hadthat Luke has Down syndrome is only mentioned once immediately removedafrom him.

It is at this stage of the mum and big sister who were fierce in their encourage- in the script because as I say, this is a story about loss,and it just so happens, that it is Luke’s story, and he film where you can start to and feel enjoyment a real senseof ofthis injustice ment wonderful little person to have coming through and matters slipping out of that control.

Al- wouldhappens they were determined nothing ever stand in Down syndrome.”

This film serves as a great ambassador to the world though Luke knows exactly what he wants to do followhis way. A few years later, Mike O’Carroll appeared in their on behalf of people with Down syndrome, firmly cementing his mother’s passing, his views are totally ignored, and lives, and his connection with Oliver was instant and a ing their right to be treated equally and to tell their own he is unprepared for what comes next. joy to witness. He became a true father to Oliver in every stories!

His life in turmoil, still grieving, he is thrust into a Portsmouth Down Syndrome Association has been home for disabled adults, which is a stark contrast to what proud to present My Feral Heart and hosted the gala we saw him enjoying with Joan. screening for the cast and crew, as well as running a series There are so many questions still unanswered at the of screenings at BAFTA to promote the film to a more end of the film, that for me, meant I had to watch it again diverse audience in the film and TV industry. straightaway. There are clues buried throughout the story that provide some clarity, but fundamentally you are still

I wanted to tell a story about loss.

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beautiful rooms SHOPPING IDEAS

Mongol

By Uuganaa Ramsay (UK, author, activist, director at Mongol Identity)

Mongol [mong-gohl] noun 1. a member of a pastoral people now living chiefly in Mongolia. 2. the language of the Mongols; Mongolian.

[Uuganaa Ramsay is a Mongol living in Britain.

When her newborn son Billy is diagnosed with Down syndrome, she finds herself facing all the taboos associated with the term “mongol”.

In this powerful memoir, Uuganaa skilfully interweaves the extraordinary story of her own childhood in Mongolia with the sadly short life of Billy, who becomes a symbol of union and disunion, cultures and complexity, stigma and superstition – and inspires Uuganaa to challenge prejudice and campaign to change attitudes.

Mongol is the touching story of one woman’s transformation from outsider to fearless champion of love, respect and tolerance. It’s a moving tribute by a remarkable woman to her beloved baby son, testifying to his lasting impact on a sometimes imperfect world.]

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wrote my memoir in memory of my son Billy and for my other children as they are growing up in Britain, which is very different from my Mongolian childhood. I felt it was important to share my story with the world because so many of us go through heartbreaks and happy times, yet very few of us share our story in an honest way. The stigma and many labels attached to diagnosis mean that instead of living our life and enjoy being who we are, we end up trying to prove our existence, battling with inequalities and misrepresentation.

As you may know, the word “Mongol/mongol” has multiple associations. In addition to describing a person from Mongolia, it is also used as a derogatory term for a person with Down syndrome and, more generally, as an insult referring to someone stupid. The associations have their roots in the nineteenth century pseudo-sciences of ethnic classification and phrenology when John Langdon Down classified people with Down syndrome as “Mongolian Idiots”. His opinion was that they shared some of the facial characteristics of the “Mongoloid”, the racist classification used in the West to describe people from Mongolia, China and Japan.

In the 1960s, geneticists campaigned to have the “Mongolian Idiot” (and associated variations) replaced by “Down syndrome”, reflecting a growing concern at the racism at the root of the term. By 1965, the World Health Organisation’s classification of illness dropped any links between “Mongol” and “Down syndrome”, and it was assumed that this association would fade over time.

However, the associations between Mongol, Down syndrome and stupidity still persist. As recently as October 2020, Formula 1 driver Max Verstappen caused uproar when he called a rival a “mongol”. The social media response which followed showed that many had no idea why this use of the word Mongol was offensive and saw it merely as interchangeable for “idiot”.

There was little recognition that using the term as an insult is both deeply racist and discriminatory. When Max Verstappen made his comments, we found a lot of people on social media defended his use of the word by saying “mongol” is in the dictionary, and it means someone who is stupid or someone who has Down syndrome.

I feel many people can talk about it now. It felt like a can of worms that nobody was willing to touch as the topic reveals truths that we do not want to know to a certain extent.

For example, John Langdon was a figure who was respected by many and seen as an expert in his field. Yet, we do not want to know the fact that he wrote a paper called Observations on an Ethnic Classification of Idiots comparing facial characteristics of people with Down syndrome to Mongolians. To illustrate the confusion with a single example, in the 1970s, the Mongolian Embassy in London was contacted by an organisation to provide some Mongol children’s photos because they were creating a photo exhibition displaying people with learning disabilities.

My memoir is not a coursebook or an explanation of how the word “Mongol” should be used. It’s simply a human story, just like anyone’s, only I happen to be a Mongol. I was reminded to accept the culture and grow more resilience and get used to how the word “Mongol” is used in society. However, I feel we deserve to know the truth, and it is up to people if they want to hurt our babies or educate themselves and move into the twenty-first century. Reviews and comments give me the strength to go on, both in coping with my grief and speaking out on equality and inclusion.

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On 3 February, Uuganaa shared the following on her Twitter feed: So happy to share this with you all: Mongol Identity dictionary definition campaign influences the Oxford Advanced Learner’s Dictionary to remove the outdated terms “mongol”, “mongoloid”, and “mongolism”.

Even the dictionary can be out of date.

To mark World Education Day on 24 January 2021, Mongol Identity launched a campaign for improved dictionary definitions of the word “Mongol” to help counter racism and discrimination against people with disabilities. We approached the Oxford Advanced Learner’s Dictionary and are very pleased with the outcome.

The managing editor of ELT Dictionaries and Reference Grammar at Oxford University Press said in their email: “Having reviewed the evidence for the words ‘mongol’, ‘mongoloid’, and ‘mongolism’, we have decided to remove these terms from the Oxford Advanced Learner’s Dictionary. The terms are no longer widely used and therefore not helpful to current learners of English.”

Dictionaries are essential reference tools, and the Oxford Advanced Learner’s Dictionary is a key learning tool used in libraries and schools around the world. Oxford University Press publishes several different types of dictionary, and they are also the sources licensed by Apple and Google, and as such are the most read online dictionaries in the world.

The managing editor of ELT Dictionaries and Reference Grammar at Oxford University Press confirmed: “We will review these definitions once again to ensure that the context and use of these words is very clear. The words will remain in our English dictionary data, clearly labelled, to help users to understand their context and use.”

We are calling on other publishers of dictionaries around the world to follow suit in updating their definitions of the word “Mongol” and ending the historical, outdated, inaccurate misuse of the term “mongol”.

Uuganaa is currently working on her feature film script inspired by her memoir..

Twitter: @Guuye mongolmemoir.com

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Epic Players

By Janice Corrado (USA, mum, educator, advocate for diversity)

Theatre is a magical experience, whether you are a spellbound audience member, a cast member working backstage to create a story setting, or a performer shining in the glow of the spotlight. But the magic of EPIC Players, a nonprofit theatre company based in New York City, creates shining opportunities for members with developmental disabilities in many ways. I purposefully spent time with executive and artistic director Aubrie Therrien to discover what’s behind the magic — and the remarkable success — of this unique theatre company.

Making the Magic of Thea Accessible to All

Nada Smith singing at

EPIC’s Cabaret at Joe’s

Pub at The Public.Photo

credit: Levue Photography, Gabriel Johnson

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PIC Players, founded on August 25 2016, lives up to its name — Empower, Perform, Include, Create — by providing opportunities for collaboration between neurotypical theatre professionals and neurodiverse members through mainstage productions, cabarets, and “EPIC Underground” openmic performances. “We started EPIC Players four years ago, with twenty players and a very small budget,” Aubrie Therrien, the founder and executive and artistic director, shares. “Today, we are sixty-six members strong, with triple the budget. All our fundraising goes into our productions, and we are proud to say that all of our members are paid for their contributions to our highquality productions. There is lots of pride in what we develop and perform.”

Among the company members, about 25% are neurotypical professionals, and 75% are neurodiverse.

Each season, the company meets together to determine what the focus of their productions will be. Everyone’s input is encouraged, and the company looks for an opportunity to provide a wide variety of theatre experiences.

“We look for productions that can represent all of our players so that everyone has a chance to shine,” Aubrie notes.

“We produce two mainstage shows a year, one of which is a musical,” Aubrie says.

“We also do two cabarets each year, where our members have an opportunity to highlight their particular talents.

In addition, we have our EPIC Underground events, which are like open-mic nights and are lots of fun. Right now, we are in the process of creating our first original musical, which is so exciting!”

Once the group has brainstormed ideas for the season, they narrow the focus to five or six plays. Then the players have the opportunity to really delve deep into the learning process. “The company is structured along two tracks: a conservatory or educational track and a performance track,” Aubrie explains. In the conservatory setting, members can select from over 100 free performing arts classes each year. “Once we have determined the plays we will produce for the year, we obtain copies of the plays, and all members watch and critique numerous video performances, break down and act out the scenes,” Aubrie says. “We learn so much from each production. It’s exciting to see the growth of our actors over time and to see them guide and mentor our new members.”

Representation is so important: You can’t be what you can’t see.

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EPIC’s vision is to provide an elevated platform for neurodiverse communities to be both represented and heard.

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n nso Joh l e i r t: Gab edi o cr est and t o Ph echr S Ric

EPIC Players also partners with the New York City Department of Education near their location to bring the EPIC experience into school classrooms. “We focus on students aged sixteen and up with developmental disabilities,” Aubrie shares. “My mom was an elementary school teacher of students with disabilities, and I had seen firsthand how amazing theatre can be for these students, giving them practice in reading, memorizing lines and songs, presenting. When I was working in theatre, I saw that there were very few opportunities for people with developmental disabilities. I knew from my research that only 2% of the roles in the entertainment industry are written for characters living with a disability; of those roles, 94% are played by non-disabled or neurotypical actors.

Representation is so important: You can’t be what you can’t see. At EPIC, our vision is to provide an elevated platform for neurodiverse communities to be both represented and heard.” After four years, the company is now reaching audiences of over 1,600 people in venues all across New York City, including Joe’s Pub at The Public Theater and The Clark Studio Theater at Lincoln Center.

The success of EPIC Players has come about both from the company’s work with schools and theatre organizations and by word of mouth. In response to the Covid pandemic this past year, the company has created virtual performances which are reaching a broader audience. “Now is a great time to become involved in EPIC because you can do so virtually,” Aubrie notes. Potential members are encouraged to visit a class to see if EPIC is right for them. Membership is through a company-scheduled audition only, consisting of a monologue, a song, and a short interview. Once accepted, company membership is free for all artists and provides free performing arts classes, headshots, résumés, casting assistance, and access to a positive social community of like-minded individuals. “We have so many really wonderful, generous people who support us,” Aubrie shares. Their support has allowed EPIC to create “a refined approach to inclusive theatre,” as one audience member has described.

What’s ahead for the company? “We’ve got big dreams,” Aubrie admits. “We’d love to have a dedicated space, just for EPIC classes, workshops, and productions.

We’d also love to see more representation of neurodiverse performers and productions at awards shows.

And, ultimately, we’d love to see all theatre companies include neurodiverse players so that we are truly represented and heard in all communities.”

Everyone’s input is encouraged… everyone has a chance to shine.

nter’s Clark Lincoln Ce t a ff o sl o R Benjamin graphy ngelo and rest Photo h Nicole D’A c e S ic R : it d hoto Cre Theater. P Yotam Braunshtein (Ariel), Miles Butler (Ariel), and Whitney Blythe (Ariel) in EPIC’s production of “The Tempest” at The Flea Theater in New York City.

Photo Credit: Ric Sechrest Photography.

For more information about EPIC Players visit epicplayersnyc.org makingchromosomescount.co.uk

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Oliver Hellowell: He Doesn’t Just Take Pictures, He is a Professional Photographer

By Wendy O’Carroll (UK, Mum of 2, retired SEN advocate, artist, author, and… Oliver’s mum)

Oliver Hellowell is an amazing and talented young man who has achieved his dream of being a published professional landscape and wildlife photographer with orders coming daily from all over the world!

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espite being born with a serious cardiac problem that necessitated open-heart surgery at three months old, Oliver has spent his life blasting all predictions and expectations into oblivion.

He was so poorly after his birth that it was thought he might not survive long enough to reach his date for cardiac surgery. After sailing through that first challenge, though, Oliver then took on the numerous other conditions and issues he was assessed as having and continued to surprise medics and educational professionals with his progress despite the many barriers placed in his way.

At the time of writing this article in March 2021, Oliver is twenty-four years old and lives with his family in the Blackdown Hills on the Somerset/Devon border.

He enjoys an interesting, fulfilling, and enjoyable life and is extremely proud of all his achievements.

Oliver’s biological father left when Oliver was six years old and chose to have no further contact with Oliver when he was seven years old. Fortunately for Oliver, he had a mum and big sister who were fierce in their encouragement and enjoyment of this wonderful little person and they were determined that nothing would ever stand in his way. A few years later, Mike O’Carroll appeared in their lives, and his connection with Oliver was instant and a joy to witness. He became a true father to Oliver in every sense of the word. Mike was a photographer, and Oliver began to want to “take pictures like Mike”. He started with his mum’s Panasonic Lumix DMC-FZ8 bridge camera but was soon dissatisfied and wanted “a really big camera like Mike’s got!” He adopted Mike’s spare Canon 5D and used Mike’s lenses, which despite initial fears, he never dropped and always held and used in a most professional manner. It became obvious very early on that Oliver had an eye for a good picture.

His view of the world brings joy to so many people across the world.

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Artist Spotlight

Four key points began emerging as Oliver’s style, framing, and composition developed.

1. He particularly loved birds.

2. He was fascinated by close-ups of water and splashes.

3. He often took pictures from the ground looking up.

4. He noticed and took pictures of detail and things the rest of us ignore or don’t see. makingchromosomescount.co.uk

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A Facebook page for Oliver’s photography was set up, which proved enormously successful, particularly after being featured in a short BBC News clip that rocketed him into the spotlight right across the globe. In 2013, Oliver asked if he could have an exhibition and sale of his work, because as he said, “That’s what photographers do”. So, after calculations around how this could be achieved, the costs involved, and with an earnest hope that the event might just break even, the family embarked on what was to be the first of Oliver’s annual exhibitions, which would continue right up until Covid prevented what would have been his seventh in 2020. The event did far better than break even, and Oliver was very proud to use his “takings” to buy everyone involved a Chinese takeaway at the end of a most successful weekend and also to fund his most favourite thing, which is a week away in a rural and preferably remote, self-catering cottage in Wales or Scotland.

This first exhibition proved that Oliver could indeed make money from his pictures.

Shortly after, a website was created so that people could order online, and Oliver’s business was born.

In the last few years, Oliver has appeared twice on BBC’s The One Show, once on BBC’s Countryfile, and has published THREE books of his photography.

Oliver won the Positive Role Model Award for Disability at the UK National Diversity Award 2015 and blew kisses to the glittering audience at the award ceremony held at Liverpool Cathedral.

In 2017, thanks to the amazing Simon Weitzman, he was commissioned by the Tennessee Board of Tourism to capture the Great Smoky Mountains National Park in his own unique style. This involved Oliver and his parents travelling to the US and Oliver’s first-ever long-haul trip in an aeroplane. Despite finding Heathrow and the large airports in America quite overwhelming, Oliver thoroughly enjoyed his time in Tennessee and made a lifelong friend in a lovely guy called Ken Jenkins, who was introduced to Oliver as a local photographer who specialises in pictures of the Smokies. Ken, who is himself a photographer of international renown, was meant to spend a morning with Oliver, but after bonding over a bacon breakfast, the two ended up spending three days together taking such delight in each other’s company.

The following year in 2018, Ken came to the UK to be part of a short film about Oliver for BBC’s The One Show, and after their pride at having their work displayed together in a special exhibition at Heathrow’s Terminal 5 Gallery, the two were both in tears when they bade farewell to each other, and Ken returned to Tennessee.

Oliver receives orders for his prints, greetings cards, calendars, and books, daily through his website, and his greatest delight is always reading all the addresses of the places his pictures are going to. Every morning he says, “Let’s see how many orders we’ve got today and where they’re going!”

He has a very large world map on the wall in his snooker room at home which is covered in dots representing all the people across the world who follow him. He has dots in Russia, Japan, Australia and New Zealand, to name but a few, as well as just about every country in Europe. The UK is completely obliterated by dots and the US only really has gaps in mountainous and uninhabitable locations!

Oliver continues to enjoy nothing better than getting out and about in the countryside to capture new images

and to take pictures of our local birdlife from our three outdoor bird hides. He is looking forward enormously to the isolated cottages in Wales and Scotland that he is dreaming of staying in once lockdown ends.

Oliver’s images have won many awards, and his work has been profiled and featured in many magazine articles. His photography continues to evolve and improve and provide Oliver with a strong sense of purpose, worth, and self-esteem. His view of the world brings joy to so many people across the world, and he is a shining example of encouragement to those who might feel that the odds are stacked against them. The messages received from his Facebook page are constantly heart-warming, and to know that Oliver continues to make such a difference to the lives of others is enormously gratifying. As Oliver says when asked, “Just get out there and do it!” Oliver suggests that anyone and everyone can “Get a camera, get out there and enjoy it because photography can take you anywhere!”

And he should know.

Every morning he says, “Let’s see how many orders we’ve got today and where they’re going!”

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For more information visit oliverhellowell.com

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“We are so grateful to Zebedee, not only for representing disabled children like Rio but also for giving us some incredible experiences as a family.” Kim Williams, Rio’s mum.

Zebedee

By Denise Humberstone (UK, mum of 3, blogger at troynize.com)

Around 15 per cent of the world’s population, or an estimated 1 billion people, live with disabilities. [World Health Organisation, 2020]. Not only are they the world’s largest minority, but they are also the world’s largest underrepresented minority in the media and fashion industry. Zebedee, a talent agency unlike any other, is determined to set that right and reframe the meaning of beauty.

Laura and Zoe

“We consider it our job, our goal to get that representation percentage right up to where it should be: 20%, in the UK and elsewhere!”

Zoe and Laura declare in unison.

Lauren by photographer Rosie Baird

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ebedee are a talent agency advocating, representing, fighting for and providing opportunities across all forms of media for over 500 people who have visible and invisible disabilities, alternative appearances and those who identify as LGBTQ+, in the UK, Europe, USA and Australia. Seventy-five of their talents have Down syndrome, different ages, different abilities, different ethnic backgrounds

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How it all started A 2017 dog walk on the beach unsuspectedly turned into a hinging life event and agency that not only dramatically changed the lives of two women but countless others in the disability community as a result. It’s certainly been a far cry Elli from a walk in the park, but one thing is for sure, their journey e keeps on gaining ground in a world which supposedly had no place for it whatsoever.

I proudly present to you two trailblazers, two powerhouses, who have been on the disability disruption path for just over four years: Laura Johnson and Zoe Proctor.

Zoe, a plus-size model and performing arts teacher for people with disabilities and Laura, her brother’s partner, a mental health social worker for many years.

The two of them were used to ranting about the lack of opportunities for people with any kind of disabilities in the media industries and hence the lack of representation and the damage in mental health it inevitably triggers. They’d had enough witnessing the hurt caused to the people they loved and were willing to try to do something about it!

It was the day they turned their frustrations into goals and goals into reality!

They returned home and set to work immediately.

They decided to found a talent agency that would create the opportunities the disability community so desperately craved leen Kath and needed.

First thing first, they had to find a name for that agency. They remembered that happy, bouncy character (who, let’s be truthful, had his own It was the day mobility issues) of the much-loved children’s TV programme The Magic Roundabout, and they turned their Zebedee literally sprang to mind!

Business plan? Nope. Market Refrustrations into search? Nope. They just knew it was the right goals and goals into thing to do!

The first talents Zebedee signed up reality! were mostly Zoe’s performing arts students.

Zoe and Laura were hoping their limited knowledge of the modelling world (Zoe as a plus-size model and Laura as the mother of a child model) would serve them as a springboard, but nothing could prepare them for those impenetrable walls of the media industries!

They had to start from scratch, learn the jargon, tame the ropes, get blood out of stones even!

Unlike that famous family from We’re Going on a Bear Hunt, they couldn’t go through layers and layers of bolted minds; they had to find ways to go over them and under them…

Their perseverance, resilience and commitment were tested to the hilt: their pleas kept falling on deaf ears, the rejections were relentless. The biggest lesson they’ve learnt so far is that ableism is real and systemic. They were at their wits’ ends.

Lenn

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How could this be?

• According to a Scope charity research in 2017, though 20% of the population in the UK is recorded as disabled, yet only 0.06% of adverts feature disabled people.

• Ironically, it’s probably easier for smaller companies to address representation, inclusivity, and diversity as the decision-makers can drive necessary changes a lot faster than bigger companies who have to go through a number of obstacle courses for major decisions to be made. It also makes them more fearful of a negative financial impact in case they get it wrong, one they would not recover from, unlike bigger companies (although all-inclusive campaigns have been receiving wide acclaim from consumers and have been financially rewarding).

• All companies also worry about the logistics, right terminology and accessibility of any photoshoot or film shoot with somebody who has a disability (although all they have to do is ask the relevant people or Zebedee who are always there to help and guide).

• There is also a worry of being accused of tokenism and see their inclusive campaign backfire on them (although they should be more concerned with not taking steps at all as consumers are now starting to shift their business to brands that reflect their core values more and more)

How are Zebedee faring four years down the line?

Slowly, painstakingly, they went from being ignored to being told “No!” without any reason and sometimes quite rudely, to being told “No!” with reasons why. And that was the first breakthrough: objections could be overcome, at least discussions could start! Bookings started trickling in…

Brands such as Disney, River Island, Mothercare became regular clients.

Zoe’s original ultimate dream was to one day have one of their models work for a high-end fashion brand.

Laura’s ultimate dream was to have one of the Zebedee babies or toddlers featured on a baby nappy or baby wipe ad.

“Wishful thinking, indeed!” everybody told them.

Well, not only were their wishes actually granted, but it all happened in the middle of a pandemic, and both selected models have Down syndrome: Lennie Rooney was featured on a Pura campaign, and Ellie Goldstein broke Gucci’s record of most-liked post on their Instagram account (nearly 1 million likes) when she starred in a Vogue/Gucci Beauty campaign!

They also went from getting unpaid or low-paid jobs for their talents to securing well-paid ones from high-street brands to massive brands such as Nike, Vogue, Kurt Geiger, Tommy Hilfiger and many more!

The bonus for Zoe and Laura is that they are not just an agency. By producing regular awareness campaigns, online/onsite workshops to further their talents’ career, social events for their mental health, they’ve created a proud community where all the talents support and cheer each other as opposed to competing with each other.

What does the future look like representation-wise?

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Zebedee will always put forward their talent if they feel they fit the brief because, as Zoe puts it: “If we had to wait until the brief requires somebody with a disability, we’d hardly ever get any bookings!” And it works, kind of. Although they only ever get excellent feedback from casting teams, the figures speak for themselves: two bookings for disabled talent per thousand bookings. Still, the silver lining is two bookings that didn’t exist four years ago.

They have recently launched Zebedee Talent Talks, a podcast giving monthly updates on their inclusion revolution movement, always with a talent talking about their journey pre and with Zebedee.

The pandemic and three lockdowns seem to have levelled up the opportunity field for talents with disabilities as all castings had to be done remotely and put them on par with their mainstream counterparts. No more anxieties due to travelling by train, or underground, or taxis, no more fingers crossed for accessible venues. None of that. They could just focus on delivering the brief.

“Ever since the Covid-19 crisis, people are re-evaluating what is important in this world. Kindness and inclusion are becoming more and more important,’ says Zoe. Thanks to their continued dedication to the inclusion revolution and in spite of their naysayers, Zebedee have now become the world’s leading specialist agency. They may have come a long way, but they are not about to put their guards down as the long and winding road ahead yields no signs of a smooth ride anytime soon. “In time, the industry will be more inclusive, and there’ll be less need for us, but currently, it’s still incredibly laborious to encourage brands to book disabled models,” says Laura. “People with disabilities are still the largest and most underrepresented minority group in the media and fashion industry,” adds Zoe. “We consider it our job, our goal to get that representation percentage right up to where it should be: 20%, in the UK and elsewhere!” Zoe and Laura declare in unison.

Hear, hear!!

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Kathleen Humberstone

By Denise Humberstone (UK, mum of 3, blogger at troynize.com)

This young woman has packed more into her twenty-two years than most of us do in a lifetime! A successful model who also recently took up acting, Kathleen gave a speech at the United Nations at seventeen. She certainly lives up to two of her nicknames: Chatterbox and Fashion Diva!

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tions. So I asked her what she would like to say and tried he odds of Kathleen being conceived were all my best to put it in writing using most of her words. She against her. It took a French woman (who had smashed it on the day and again a few months later in lived all over the world) and a British man (who Spain! grew up in South Africa) to meet at their then work When Kathleen was nearly eighteen, she expressed place (automotive industry-related) in Kuwait! They fell in a strong desire to become a model, which didn’t come as a love and… Kathleen was born in Jeddah, Saudi Arabia, of surprise given her natural love of the camera and propencourse! sity for daily catwalks in the kitchen! And as always, she Her sister followed suit three years later, which is expected me to facilitate this. I tried. And failed. Even just when the family moved to Dubai. Her brother completed five years ago, representation of people the family the following year. Fate with a disability in the media was still then sent us to India, although everyquite rare, never mind a visible learning thing was packed and sorted for Italy! disability! The online registration process The three-year planned stay there of mainstream agencies made it imposabruptly shrank into three months, sible for people like Kathleen even to be and the family was called to China this considered. time. For three years… which turned Until I stumbled upon Zebedee into just one (don’t ask!). And that is online, an agency specialising in disabiliwhen the family landed in the UK, yet ty and differences representation. They’d another completely different country, only just recently set up shop. I applied climate, and culture. Amazingly, we for Kathleen, and she was signed up have stayed put since! shortly after. We’ve never looked back!

Not that moving would be a problem for Kathleen. She’s always been the one who adapted the fastest out of all of us, to a new home, a new language, a new school, new people, new weather… I can’t believe I shed otography Ange Harper Ph so many tears and stayed awake so many nights, worrying about how she would cope each time we had to move. The truth is, she has just always taken everything in her stride as long as she had her main pillars in the picture: her immediate family.

It became very clear from the start that Kathleen is what is called “a communicator”: eager to please with an unquenchable thirst to learn, aptitude to absorb and ready to try just about anything!

Although extremely vocal but non-verbal until about four, she was able to communicate using approximately a hundred signs that I had taught her from when she was eighteen months and even came up with a couple of her own (for seatbelt and handbag!). Those signs turned out to be a great bridge between English and French and proved even more useful when she started to read as although she recognised the written words and couldn’t yet say them, she could sign them! She sadly, but naturally, dropped the signs as her spoken language progressed. We are now learning Makaton for Kathleen’s benefit as it is likely that given her hearing impairment, Kathleen will eventually need it at some point in her life.

Better be proactive!

At the age of seventeen, Kathleen somehow Ang got the amazing opportunity to be a guest speaker eH arp at the United Nations. It was around the time Kather P hot leen was brutally exposed to Non-Invasive Prenaogr aph y tal Testing (NIPT) while listening to the radio and when I had to bring her up to speed – an extremely delicate topic to navigate, as you can well imagine.

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ambassador SPOTLIGHT

Surprisingly, 2020 was her busiest year ever!

Kathleen has had incredible opportunities since then and her confidence, which certainly didn’t need any boost, grew exponentially: she’s modelled for River Island quite a few times, travelled to France to model for Tommy Hilfiger, worked at Fund Fair for supermodel Natalia Vodianova’s charity Naked Heart Foundation, was featured in Elle UK magazine as one of their 50 International GameChangers of 2020, walked at the London Fashion Week a few times and took part in wonderful awareness campaigns (Kintsugi, I am a Marvel, World Down Syndrome Day, International Women’s Day), and so much more…

Surprisingly, 2020 was her busiest year ever!

She has recently enjoyed appearing in ITV’s Unforgotten and BBC’s Line of Duty TV series. She is also one of the main characters in one episode of a new ITV crime drama called Professor T with actor @patheticgirl63 Ben Miller, a series which will air before the end of the year.

She enjoys making the occasional video for MENCAP charity and loves giving talks about her life to midwives (organised by Down’s Syndrome Association for their Tell it Right campaign).

When she is not busy modelling, Kathleen watches Friends on TV (she knows every story, every character’s name and actors’ real names!) or fills in notepad after notepad with what she watches on YouTube. She is a lot more switched on than we are when it comes to celebrities! She is also keen on exercising and obtained her very first medal when in 2019, she took part and completed the first quarter of the Thames Path Challenge: a 28.5km non-stop walk in nine very long hours, for which she trained for four months.

Apart from dreaming about walking fashion Photographer: Murat Ozkasim runways around the globe and modelling for Victoria’s Secret and Victoria Beckham, she is keen on interviewing people and keeps asking me why I still To follow Kathleen: haven’t arranged for her to interview Ellen DeGeFacebook: Kathleen Humberstone Model neres, Michelle Obama, Oprah, Jimmy Fallon, Jennifer Instagram: kathleenhumberstone Aniston, and Reese Witherspoon! I’m fast running Twitter: @KathleenHumber4 out of excuses now that lockdown is finished!

TikTok: kathleenhumberstone On a personal note, Kathleen is determined that at some point, she will marry her boyfriend of ten years, Jack. She says they won’t have children because it hurts too much, costs too much, and she doesn’t want to give up going to pubs and parties!

Oh, and apparently, they’ll have a Chihuahua pet dog, and both will have a job and live in a nice house. Did I mention she was bossy and stubborn, or rather ambitious and strong-willed?

There, she’s got it all sorted out… and keeps us on our toes in the meantime with her never-ending projects!

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WARNING: Kathleen still can’t fathom why everybody wouldn’t be thrilled to listen to her talk and/or sing all day or what’s so bad with flirting shamelessly.

So, I wholeheartedly apologise to our friends, neighbours, complete strangers, past, present and future…

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Cali Is 7 years Old, She Has Trisomy 18

by Jemima Alexander (UK, mum, blogger, advocate)

Jemima writes about how, following the birth of her daughter Cali, she had to start questioning doctors’ prognoses and blanket statements in a hurry as well as clueing herself up about Edwards syndrome and its related conditions in order to potentially safeguard her daughter’s life.

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ur dog died this week. Sweet, smelly old Eva. She came to us when we lived in Spain, and we mollycoddled her obsessively in those pre-children times. She quietly observed our lives for eleven years, rarely asking for much and always tolerant when we needed to bury our sad faces in her warm fur or pick her up to waltz joyfully. She was extra sweet when I was pregnant with Cali and uneasy when I first came home from hospital without her. From her basket, she watched the years with Cali unfold and felt all the emotions that tumbled around the house. In the last year or so, Eva would often position herself next to Cali so she could caress her haunches.

The day before she died, Eva fractured a bone in her leg. Under anaesthetic, it was discovered that the leg was infested with bone cancer. The vet’s conclusion was that the bone cancer would stop Eva from healing and that nothing more could be done for her. We were asked if she should put Eva down there and then, or if we would like her brought back so we could say goodbye and then have her put down when we were ready.

Through sobs, we decided that the best thing for Eva would be for her to slip away whilst under the anaesthetic.

This is what happened. I never got to say goodbye. By the time I returned home from work, she was buried in our garden.

The next day I realised that I hadn’t thought to question the vet’s prognosis. I’d had complete trust in her experience and integrity. She’d said it was incurable, so it must have been. Cody had asked if there was any point seeking a second opinion, but when she’d said there wasn’t, he’d believed her.

I presume we were right to trust her. We didn’t trawl the internet looking for families who’d had the same diagnosis but had found a way of humanely prolonging their dog’s life. Nor did we have a stab at making an alternative diagnosis ourselves. We certainly didn’t wonder if our dog had been a victim of institutionalised discrimination against her breed or condition. And we weren’t left agonising about whether we did enough for her. As I’ve pondered this, I’ve been struck by the ease with which we were able to trust a vet we hardly knew compared to the wariness with which I trust even the best of Cali’s doctors.

Until I had a child with Edwards syndrome, I had a high level of confidence in medical professionals. This trust started to corrode on Cali’s eighth day of life when we were told by a consultant neonatologist that any type of resuscitation was inappropriate for our daughter. This announcement was made in spite of the fact that Cali had needed nothing more than a nasogastric tube and some UV lights to ready her for discharge. She was functioning well, breathing and feeding and, at that point, only her heart condition had been detected. It was a potentially severe heart condition but one that wasn’t yet affecting her (and still isn’t) and which was theoretically fixable. So, given this reasonable bill of health, why was there to be a blanket policy not to resuscitate our child? It was because she had Edwards Syndrome.

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about Health

When I ventured the opinion that wouldn’t resuscitation be OK if it were to get Cali through a one-off apnoea, the hospice at home nurse, who was also in the room, was called upon to second the neonatologist’s view. She shook her head, saying, “Resuscitation can be very invasive”. The pair of them half won me over, though in my head, I wondered if I would mind my baby being “invaded” if the outcome was that she lived. But at that moment, I was a wreck of a person—exhausted from recent childbirth, from expressing milk eight times daily and from the unspeakable shock and trauma of the past few days. I dully supposed they must know what they were talking about. The only win I achieved in that meeting was the permission to borrow the apnoea alarm Cali had been using, even this was contested, with the consultant quoting research at us that parents find apnoea alarms more anxiety-inducing than helpful. I later realised this research referred to parents of premature babies just released from hospital, not parents in our position who just wanted to be present when their child died.

After the meeting, the neonatologist wrote out for us our “Child and Family Wishes” document, section “Plans for care during an acute life-threatening event” where he ticked the boxes to decline resuscitation, and just like that

we signed away Cali’s rights to life. We took our baby back to the room where we were staying and prepared ourselves to go home for “family time” or, put another way, to wait for Cali to die.

I believe that our decision to sign that first “wishes” document was not based on informed consent. Neither the doctor advising us nor ourselves were properly informed about Edwards syndrome. Part of me doesn’t want to give this doctor too hard a ride as I know he believed he was acting in Cali’s, and maybe our, best interests. However, in my opinion, he was committing a very basic error, which was that he was treating Cali as a syndrome rather than as an individual. Instead of assessing how well she was coping with the syndrome that she had, as the unique being that she was, all he could see was that she had that particular syndrome. And as the overarching medical opinion was that it was not a survivable syndrome, that was enough to make him feel he needed to secure our consent not to resuscitate Cali. The only way she would survive would be if she did it completely on her own.

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Is this how doctors normally treat patients? No! Normally, a patient’s clinical condition is carefully assessed, and then treatments are discussed. If a patient’s ability to survive a treatment is questionable, then this will be part of the discussion. It amazes me that we live in a country where a consenting adult with a terminal illness cannot be helped to die, and yet in a small room in a well-regarded children’s hospital, a single doctor can make a decision about whether a newborn should be resuscitated.

And in that cloistered world of neonatal intensive care that this doctor worked in, his decision feels all the more discriminatory when it’s considered that much of his work was spent working on very premature babies, many of whom would come perilously close to death, sometimes repeatedly, in their struggle to survive outside of the womb. Medical intervention for very premature babies is brutal and invasive, but it is, as far as I understand it, the norm to offer full intervention. My point is not that they shouldn’t receive such treatment, but why another baby, also medically fragile and facing an uncertain future, cannot access any treatment. I wonder if the ability to coax and nurture a baby born at twenty-three weeks through to term is simply more of an accolade for medical science than the ability to give a baby with Edwards syndrome a few weeks, months or years of life?

The only reason we didn’t blindly let Cali die in that first month or two, when we knew nothing about Edwards syndrome, was because Cali never came close to death. By the time she needed her first big intervention, which was the placing of a nasopharyngeal airway at three months, we knew enough about the condition and attitudes towards it, to arrive at hospital armed with suggestions, with a forcefield of cynicism and our fists up, ready for the fight. And Dr H, you wonderful man, you disarmed us straight away by gently saying that you didn’t like to say no to things and let’s see what we can do…

As an adjunct to this, the same neonatologist who had convinced us to sign Cali’s right to resuscitation away, got wind of this appointment with the respiratory consultant and materialised as we were waiting to be seen. He told us that he’d come to tell us not to “make things too medical”. Quite an effort to go to; he’d had to walk between two hospitals to find us. Presumably this was an indication of how strongly he felt that we shouldn’t pursue treatment for Cali. And yet, when I met him in the street some months later, he confessed that he had now changed the way he thought about Edwards syndrome because of Cali. Hearing this has helped me to continue to push myself to educate medical professionals whenever I encounter them.

My own experiences and my involvement with the Edwards and Patau community have convinced me that self-fulfilling prophecy has a significant role to play in the death of many babies with Edwards or Patau syndrome.

We see self-fulfilling prophecy occurring prenatally when pregnant mothers with a diagnosis will be offered termination countless times even when they have decided to continue with their pregnancy. They may then be denied additional scans to monitor their babies and the efficiency of the placenta. They may be denied the type of birth that they believe will give their baby the best chance of survival. We also know that once a prenatal diagnosis is given, parents are often told that their child will not receive life-saving medical help once they are born. Parents receiving a postnatal diagnosis will often feel compelled to follow the medical professionals’ lead of minimal or no intervention.

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The only reason we didn’t blindly let Cali die in that first month or two, when we knew nothing about Edwards syndrome, was because Cali never came close to death

about HEALTH

All of this leads to more babies with Edwards and Patau syndrome dying, a vicious circle of self-fulfilling prophecy. Their deaths are easily absorbed into the high mortality rates of Edwards and Patau syndrome, as often it’s impossible to say how much of a difference more medical support would have made. But I am convinced that some of those babies could have become surviving children. What is also rarely considered is whether a baby might actually have a mosaic form of the syndrome, which can considerably soften the effects of the condition.

I’m not denying the high mortality rate amongst babies with Edwards and Patau syndrome. However, our babies are individuals and are uniquely affected by their extra chromosomes. All I ask is that our babies are treated according to their clinical condition and that their lives are seen as being as valuable as any other child’s. As a good friend of mine, whose eight-year-old has full Edwards syndrome, says, if you asked doctors not to resuscitate your “normal” child when they come into hospital with a treatable condition, the likelihood is that the hospital would contact social services.

In fact, when parents won’t consent to essential treatment for a child, doctors can apply to the courts to override them, or if it’s an emergency, ignore their wishes altogether. It really pains me how unlikely it is that any doctor would try and override the wishes of a parent of a child with Edwards or Patau syndrome if they came into hospital with an easily treatable condition, and the parents then decided they didn’t want appropriate medical intervention.

But it’s not all bad. Not all doctors write off our children. There are babies all over the country that have received the right treatment at the right time. There are also babies and children who have received treatment after a fight and still in time for it to help. The older our children get, the more likely it seems that they will be assessed individually rather than syndromically. Attitudes, I believe, are slowly changing; heart surgery sometimes happens, the first British child with full Edwards with a tracheostomy is doing well. These children that have been treated are trailblazing the message that our children are worthy of being medically assessed rather than fatally pigeonholed.

Having a child with Edwards or Patau syndrome may mean that we find it hard to trust the medical profession. Many of us will have experienced discrimination towards our child at some point. But it’s important that I also say that since that landmark appointment with the respiratory consultant, in general, Cali has received exemplary care from the medical profession.

That’s with the caveat that she’s never yet fraternised too closely with the Grim Reaper.

As it is, I feel that I need to understand as much as I can about Cali’s many medical conditions, just in case treatments are being overlooked. I am always on the lookout for discrimination. And I force myself to try and educate every last doctor I meet just in case it makes a difference to another child one day. All of this is tiring and so much responsibility. It’s taken the lightness of being able to trust a vet with my dog’s death to understand the heaviness of trying to safeguard my child’s life in a health system that doesn’t always value her existence. www.soft.org.uk

May it never happen to another family… makingchromosomescount.co.uk

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Diagnostic Overshadowing – Hazel’s Story

by Alison Morley for DSRF UK (UK, blogger, mum of 2).

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hat is diagnostic overshadowing?

Today we’re going to talk about the effect of diagnostic overshadowing in one little girl’s life. But first, what is it? Diagnostic overshadowing is when “symptoms of physical ill health are mistakenly attributed to either a mental health/behavioural problem or as being inherent in the person’s learning disabilities” (Emerson and Baines, 2010).

It can cause anything from a slight delay in diagnosis to an increased risk of death because someone tells you, for example, “It is normal for Down syndrome children to have low oxygen/not pass stool for days… “ What factors affect the medical care of people with learning disabilities?

“…normal for Down syndrome”

Alison is mum to Hazel. In spite of her very loud gut instincts, she listened to the medical professionals and the well-meaning people of the Down syndrome community.

She shouldn’t have.

She should have challenged them.

She learnt the hard way so you won’t have to…

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We feel that this phenomenon is a critical piece in the puzzle when we look at the reasons for the lack of research and the poorer health outcomes in our community.

Despite the certainty touted on the Down syndrome awareness memes recently, we can only draw one conclusion when we read each “fact”: This is what we know now. Take, for example, the lifespan meme; why has that increased? Basic medical care, heart repair operations have been made available to those who need it. Here we are in 2021, and much is still unknown about Down syndrome (and its associated conditions) and, therefore, the possible best supportive therapies. Has the book closed on Down syndrome, marking a “full stop” on progress and advances to help our loved ones? No, not if we are looking, learning and investigating the possibilities through medical research.

Hazel’s story Hazel is nine years old and has the biggest smile you could ever see. And it is often accompanied by the heartiest belly laugh imaginable. Wherever you are in the house, whatever you are doing, you stop and go see what’s made her laugh. Often you have no idea, but you join in anyway – it’s contagious.

Hazel is a joy to be around!

Hazel has Down syndrome. She has autism. She also has a feeding tube. She’s still learning to walk, and it’s hard for her.

Oh, and she doesn’t talk, at least not with words.

When Hazel was born, I remember hoping and praying that she had the “not too bad” version of the condition.

The one that we often hear talked about in the Down syndrome community. The one that said she would walk, talk, go to a mainstream school, get a job, get a flat, get married and live happily ever after – the “what’s so Down about that” kind of narrative – that version.

about HEALTH

It’s that version – or rather the expectation that she should be that version that I think may have held Hazel back in some ways. It’s certainly held me back as a parent from helping her overcome her challenges. I’ve often been told by our own community and some in the medical profession who support us that, “She’s just delayed. She’ll get there.”

Concerns I’ve had about what appears to be more severe “delays” in Hazel than in most children with Down syndrome have, at times, been minimised. I’ve been handed the overly anxious parent badge more times than I care to remember.

And, when that badge is given by a medical professional, it’s often accompanied by a shrug of the shoulders or a sigh.

“Yes, well, that’s Down syndrome.” or “That’s the autism.”

Conversation closed. No further explanation or exploration needed. See you in a year’s time.

Hazel is the happiest nine-year-old I know. She accepts the world around her and the people in it as they are. She makes no demands on them other than to be loved. For me, loving Hazel means caring for her and being her voice. I need the help and determination of others to do this; to be willing to explore her life, her experience, her needs in depth.

I need, she needs, the medical profession to go the extra mile to find out how best to help her. She needs to be seen as Hazel, a person with Down syndrome but a person first. Yes, Down syndrome is in every cell, every fibre of her being, of Hazel. But it should not automatically disqualify her from the help she may need throughout her life. It should not be used as an end to a discussion on her needs but as a beginning.

Why are her ankles so badly deformed, meaning that she will never be able to walk without orthotic support? Is it “because she has Down syndrome” or, more recently, “be-

cause she has autism?” And, if it is, then why is no one doing anything about trying to help find the causes of this and treat it at an earlier stage? The Down syndrome community is badly let down by Government on this as they continue to pass over them as being worthy of any kind of research into improving their lives. Or perhaps they are so deformed because we didn’t know there was a problem. We assumed she was “just delayed” and had no idea that our attempts to help her to learn to walk were actually doing more harm than good. And, in what other aspects of her physical and emotional development is more harm being unnecessarily done due to the fact we have labelled those areas “delayed” without fully understanding why?

A delay has a cause that should always be investigated. When Hazel’s older sister experienced delays in learning to walk, investigations were made immediately, and regular treatment ensued. The delay was enough to warrant concern – a question mark. A plan was put in place. She got the help she needed.

Yet with Hazel, it seems as if having Down syndrome is a full stop. A reason to end the conversation and offer no further explanation. And, for too long, our community has been guilty, myself included, of accepting this.

In Hazel’s case, diagnostic overshadowing is what #HoldsMeBack, and that’s why I got behind the DSRF’s campaign to raise awareness and challenge thinking in this area. It’s too critical to the well—being of all people with Down syndrome to ignore.

[Diagnostic overshadowing] is too critical to the well-being of all people with Down syndrome to ignore.

Reference: Emerson, E., Baines, S., Allerton, L., (2010). Health Inequalities and People with Learning Disabilities in the UK.

You can follow Alison and Hazel at downrightjoy.com

living the LIFE

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GiGi’s Playhouse

By Denise Humberstone (UK, mum of 3, blogger at troynize.com)

GiGi’s Playhouse, the only international network of Down Syndrome Achievement Centres, and one we all wish was available at our doorstep: 99% volunteer-run, they provide free, life-changing, therapeutic and educational programmes from prenatal diagnosis all the way to career skills and so much more!

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riggered by love and fuelled by passion, Nancy Gianni, CNN hero, founder and Chief Belief Officer of GiGi’s Playhouse, started the first Playhouse in 2003, a year after her third child Giuliana (The GiGi) was born with Down syndrome. Eighteen years later, GiGi’s Playhouse has grown into a $14 million nonprofit organisation and an international network with over fifty—three brick-and-mortar locations across the United States and Mexico and 200 startup enquiries in thirty-six countries!

“And I’m still just getting warmed up!” says Nancy.

Their mission statement: “Changing the way the world sees Down syndrome.”

Their motto: “Educate, Inspire, Believe.”

The GiGi’s extra chromosome was a big surprise, and

Nancy soon realised the gaping lack of support for people like her daughter and their family. That’s when she decided to take matters into her own mighty hands and create from scratch the hub she wishes had been available to families like hers from day one. Little did Nancy know her project would keep on snowballing! The demand was real, and she committed to meet it, over and over again!

The most wonderful aspect about the Playhouses is that all the high-quality, progressive, result-driven programmes they offer for individuals of all ages, their families and carers, are entirely free! Those programmes also tackle pretty much all the challenging areas that people with Down syndrome typically face, be they physical or cognitive.

From parents with a prenatal diagnosis who need answers and/or acceptance and/or celebration, or adults who need training in writing a résumé or vocational training, the Playhouses will welcome them with open arms and a big hug.

“And I’m still just getting warmed up!” says Nancy.

The GiGi

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about EDUCATION

One-to-one math tutoring

What programmes do they offer?

• LMNOP LMNOP – Language, Music N Our Peeps— is the bestattended therapeutic programme across the playhouse network. Interactive and engaging, LMNOP helps infants to three-year-old toddlers learn basic sign language and other forms of communication using music and language—based activities. Seated and crawling activities during LMNOP also advance gross and fine motor development growth.

• Language therapy • Math tutoring • Literacy tutoring • GiGiFIT Exercise for all with GiGiFIT created in collaboration with skilled physical therapists and designed to address common issues such as hypotonia, excessive joint laxity and decreased balance, GiGiFIT offers six programmes to suit every age group, from babies to adults.

GiGiFit Class

• GiGi U I would like to say this is probably my favourite, but in all honesty, they’re all my favourites! GiGi University offers multi-pronged, goal-oriented programmes to adults to grow their confidence and prepare them for work readiness through their mantra: Confident U, Healthy U, Whole U. How? One way is to teach them about nutrition through cooking healthy meals. Another is to learn office and career skills.

And finally, walk the talk through their Hugs and Mugs retail cafe, where they apply all of the above!

Genius!

• GiGi’s at Home or The unexpected silver lining of the pandemic You’ve guessed it – not even Covid-19 could slow Nancy down! Within ten days of all the centres closing in March 2020, brutally and indefinitely denying their service-users all their crucial weekly programmes, Nancy and her team put in place GiGi’s at Home, providing all usual 4,400 hours per week of therapeutic and educational programmes virtually!

A real tour de force further enabling GiGi’s Playhouse to serve families in more than forty-five countries!

Hugs and Mugs retail café

living the LIFE

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• How to get the mainstream population on board?

Nancy is well aware that in order to fulfil their mission statement, “Changing the way the world sees Down syndrome”, she needs to reach the mainstream audience as well. The success of GiGi’s Playhouse has provided a great platform and springboard to launch another two projects: • The #generationG social media movement Its goal is to create a ripple effect by getting one million people to publicly promise to be accepting, generous and kind. All you have to do, for example, is sit with a new friend at lunch, volunteer, smile and say hi to someone new, or whatever, and then draw a heart on the palm of your hand and tag #generationG on social media.

• GiGiFIT Acceptance Challenge A yearly challenge in an effort to make the world a more accepting place for individuals of all abilities. This year on June

5, GiGi’s Playhouse is aiming to unite 1 million supporters in a physical and social MOVEment for Acceptance! You just have to move, post and tag #GFAC #moveforacceptance!

• Microsoft Information Services and Technology (MIT) Last year Nancy met with Microsoft executives at GiGi’s Playhouse for an eight-hour planning session on how artificial intelligence and machine learning can help individuals with Down syndrome. MIT has joined forces with GiGi’s to develop software that will help families with a child who has Down syndrome live healthier, fuller lives. “We’re not only changing the way people with Down syndrome are viewed but how they are going to be taught!” Through technology and artificial intelligence, Nancy anticipates not only being able to help families who are fortunate enough to have a Playhouse in their community but also millions of families all around the world.

More at www.gigisplayhouse.org

Lmnop session

“Changing the way the world sees Down syndrome.”

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living the LIFE

• A Little Something Extra Podcast Launched in January 2021, every episode will feature guests who have accomplished the impossible and have changed the world! Be prepared to find yourself motivated with every instalment by a wide range of guests, including A-list celebrities to everyday people! The first four episodes feature NBA player Justin Jackson and his wife Brooke; model and advocate Amanda Booth with her son Micah; actor and advocate John McGinley (Dr Perry Cox in Scrubs) and son Max; Tom Ricketts, CEO and Chairman of The Chicago Cubs. They have lots more lined up for upcoming episodes! Learn more at www. alittlesomethingextrapodcast.org.

• Book Somehow, Nancy found the time and energy to write #GenerationG: A True Story of Miracles, Hope, and Unconditional Acceptance, an inspiring, educating and moving memoir. All profits from the sales of this book will go toward GiGi’s Playhouse and furthering their mission of global acceptance for all through Generation G! I can’t wait to see what Nancy and GiGi’s Playhouse come up with next, and I have never felt more confident in writing those words at the end of an article: watch that space!

living the LIFE

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Teach Me Too became a free national resource in December 2020.

Teach Me Too

By Johanna Aiyathurai - CEO of 21Together & Teach Me Too

Teach Me Too is a free online video library focusing on education and speech and language skills, specifically designed around the learning profile of children and young people with Down syndrome.

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tarting as a Covid-19 inspired learning programme in Kent by local charity 21 Together, Teach Me Too soon sparked global interest for its innovative approach to learning, specifically designed for children with Down syndrome. Thanks to brilliant community fundraising and a dedicated corporate supporter, Quality Compliance System (QCS), Teach Me Too became a free national resource in December 2020.

Forty videos make up phase one and two of the programme, focussing on “stage” rather than “age”, which allows them to be enjoyed by a wide range of ages.

Each video is supported with additional learning resources so that parents and therapists can understand the techniques used and be introduced to them outside of the sessions. With over eight hours of content, these videos can be watched independently but work best when an adult supports the child or young adult and uses the ideas to continue learning at home or school.

Programme highlights: • Video library of short videos delivered directly to the children.

• Each stage has 20 videos between 10-15 minutes • Ten videos are produced and led by Inclusively Down (specialist teachers).

• Ten videos are produced and led by Key Communication (specialist speech therapists).

• All videos are designed to use the strengths of learn-

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ing for children with Down syndrome and target key areas of the curriculum.

Teach Me Too cannot replace specialist intervention, but the videos can help plug the gap by delivering key early cognitive and communication skills, even during times of lockdown.

We firmly believe that every child, regardless of background, income, or family situation, deserves access to education materials that meet their needs. This is why we tirelessly worked to ensure that it is a tool that is widely available and would benefit the community as a whole. Since its inception, Teach Me Too has continued to grow and currently has over 3,000 registered users consisting of parents, carers, schools, nurseries and other educational settings, both local, national and even international. Every day we receive heart-warming testimonies from those who firmly believe that the resource has been lifechanging for their kids.

Our aim is to produce an ever-expanding programme to provide more content and reach more children and young people, and we are currently raising funds to make that happen. www.teachmetoo.org.uk

about EDUCATION

The Naked Truth about Zoom Schooling

by Amy D Hernandez (USA, blogger, mum of three)

Charles is twenty-two years old. Like most of his peers, he’s been Zoom-schooled for what feels like forever. Here’s a breakdown of a typical Zoom day, seen through my constantly rolling eyes…

When the trials and tribulations of Zoom schooling can either send you into hysterics or a nervous breakdown, choose hysterics because in the scheme of things…

Charles Hernandez

Thirty seconds to log in time, and where is Charles?

Fixing his hair in the mirror.

Forget that he is wearing flannel pajama pants and last night’s ratty sleep shirt; The hair is what is important.

Thirty minutes into class, and where is Charles?

Getting a drink as s l o w l y as possible.

Filling his water bottle is not an option until class is underway; this is a Charles rule.

Almost lunch time, and where is Charles?

No, really, WHERE IS CHARLES?!?

Lunch is done, and where is Charles?

Video is on! Audio is on! Shirt? Off. (Then comes the email… Mrs Hernandez, Chuck is shirtless.)

It’s after break and where is Charles?

Shirt back on, video on, audio on…beer in hand.

(Then comes the email… Mrs. Hernandez, Chuck has a beer on camera.)

These are the moments I never imagined when I decided to have children.

Thirty minutes before class is done, and where is Charles?

He’s turned off his video again.

“CHUCK! WE CAN’T SEE YOU!” comes the chorus from his iPad. Fifteen minutes before class is done, and where is Charles?

Finally, FINALLY! He’s shirted! His audio AND video are on! He is participating!

And (sigh) tomorrow, we get to do it all over again. makingchromosomescount.co.uk

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Special Needs Jungle Clears the Way for Parents

By Hayley Newman (UK, blogger, mum of 2, author, speaker, inclusion ambassador at Downs Side Up, linktr. ee/downssideup )

Founded in 2008 as a way to support parents and educators as they navigate the often stressful and daunting mazes through the Special Educational Needs and Disabilities (SEND) world, Special Needs Jungle (SNJ) has now become the UK’s largest and most respected SEND platform.

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anonymously process information at whatever time of day ormer journalist, author, and Special Educational or night I needed it without fear of being judged.

Needs (SEN) parent Tania Tirraoro (mum of two Immediately, I tapped into an incredible online young adults with autism, ADHD and Ehlers-Danlos world inhabited by passionate individuals. Tania Tirraoro syndrome, she herself has Ehlers-Danlos syndrome, and Renata Blower were among the first two special needs is a wheelchair user and was diagnosed as autistic at the bloggers whose words lifted and carried me. SNJ’s help age of forty-six) first founded Special Needs Jungle in proved invaluable, for example, when I had to decide what 2008. a specialist school could offer Natty over a mainstream Together with co-director Renata Blower (mum to school. They also were a much-needed lifeline during the Dominic, who has an undiagnosed neuromuscular condition which means he is physically disabled and has complex dreaded Education, Health and Care Plan (EHCP) process!

When I find myself out of my depth, rendered health needs; Lilia, who has a mild version of the neuroemotional and overwhelmed by the system, Special Needs muscular condition, as does Elliot, who also has high-funcJungle is my go-to point of reference, from tioning autism, ADHD, dyspraxia, and the daily challenges to the bigger all-con“I firmly believe the sensory issues), they tirelessly and selflessly bring a rare mix of clout, integrity, weakest among us should suming issues.

Always topical and trusted, these and credibility to this one-stop shop of be supported and not powerhouses don’t shy away from polariscurrent information so that children and vilified, victimised or ing or taboo subjects.

Their March exposé young people achieve better outcomes. abandoned.” on Fabricated or Induced Illness (FII), Their determination has enabled them to advise at a high level in Government: They are both which they published along with access to a free webinar to help parents protect themselves from false allegations, is a on the SEND Ministerial Group, SEND Ministerial Roundcase in point. table Group, and Tania is on the Ofsted SEND Stakeholders Tanya says: “I firmly believe the weakest among us Group. should be supported and not vilified, victimised or abanSpecial Needs Jungle has made a difference for doned.” countless families. The site is packed with trusted, parentled information, accessible resources, personal stories, and informed opinion pieces. They cover topics that include dis- Join the Special Needs Jungle Family The SNJ team have expanded over the years to ability, learning disability, rare diseases, mental health, and autism. They aim to inform, educate, and empower families include a highly respected team of contributors with legal, medical, and educational backgrounds, such as Indepento self-advocate confidently so that children and young dent Provider of Special Education Advice (IPSEA) expert people get the help they need to live the best life they can.

Marguerite Hayes and Matt Keer, dad of two deaf children SNJ gets an incredible and very telling traffic of 250,000 who has bitter experience of the tribunal system. unique visits per month.

They also offer training and a consultancy service Every parent’s support network is unique. But in and are able to advise on the complex EHCP process and the early days, I withdrew. As much as I wanted to know legal questions. everything I could about Natty’s condition and the best possible ways to support her, I couldn’t bring myself to meet other parents or contact our local support group.

Instead, I preferred to read everything I could get my hands on, from books and leaflets to websites. This way, I could 48

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about EDUCATION

An Overview of SENDIASS

By Marina Crean - Support Worker at Hampshire SENDIASS

Local SENDIASS (Special Educational Needs and Disabilities Information Advice and Support Services) organisations can be a lifeline when going through the never-ending, daunting, confusing pile of red tape that can be life changing for better or worse for the individual concerned (from baby to twenty-five years of age) depending on how streetwise you are when filling it all in…

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ampshire SENDIASS was formed in January 2019 and provides one point of contact.

It is a statutory service working independently from the local authority. This service provides information, advice and support for parents and to young people themselves. Hampshire SENDIASS operates in line with nationally agreed service principles, including impartiality of information and empowerment of parents, children and young people. We signpost to other services and agencies that can give more specific information in certain cases. All staff and volunteers are trained to the Bar Board standards in the statutory framework

by IPSEA, the Independent Provider of Special Educational Advice.

In 2014, the Children and Families Act made it a legal requirement that the local authority in England must arrange for children and young people with a disability and their parents to be provided with advice and information about matters relating to the special educational needs and disabilities of the children or young people concerned.

SENDIASS provides three pathways for assistance: Information, Advice, and Support.

Parents and young people needing advice contact us via self-referral, maybe following attendance at a clinic such as those held by the Hampshire Parent and Carer Network or Barnardo’s, or by calling our telephone helpline.

They can also send an enquiry by email. Sometimes a professional will make the request for them. We listen to views and concerns about educational issues, including health and social care aspects, and help to explore options.

Capturing the views of the child or young person that we are working to support is essential in our work.

We give advice about the child or young person’s rights regarding education and explain how to complete forms. We explain the processes and timelines involved, such as for annual reviews and exclusion processes. We assist in accessing other services, including applying for an Education, Health and Care Needs Assessment, for example. A frequent request is for advice about preparing for meetings with schools or mediation meetings with the local authority. In some circumstances, we can attend the meeting if this is needed.

In some cases, we can offer support to access the statutory appeal process. This may include assistance with preparation for a tribunal hearing which we might be able to attend with the parent or young person if they cannot do so by themselves.

The Hampshire SENDIASS team consists of triage support assistants who manage the initial calls and emails

about EDUCATION

and signpost to services and information sources where possible. Increasing the number of triage support assistants in 2020 has been successful in empowering two-thirds of parents and young people to go on to resolve enquiries for themselves. These include advice about preparing for and attending meetings; reviewing a draft Education, Health and Care Plan (EHCP) and how to respond to the local authority; advice about managing behaviour that challenges and where to find support, and how to respond to concerns about SEN support in school.

Most of the team, including our dedicated volunteers – who attend some meetings, review Our Story drafts and read through draft EHCPs which enables us to support a larger number of enquiries – have a personal connection with SEND either as parents or in their previous professional lives, for example, as teachers, social workers or careers advisors.

Section 19 of the Children and Families Act 2014 clearly states that English councils must ensure they involve children, young people and families in decisions about themselves and the local area by: • taking account of their views, wishes and feelings • allowing them to participate as fully as possible in decisions • providing them with information or supporting them to enable this participation SENDIASS is a “universal level service”, meaning that it is universally available to everyone living in Hampshire.

As such, it exists at the base of the pyramid of education, health and care services. There are instances where the advice that families or young adults need goes beyond the scope of SENDIASS. In these cases, we would signpost them to other support services and specialist services within the education, health or care sectors both locally and nationally. IPSEA, for instance, provide excellent, legally qualified support to parents in certain circumstances, and we always recommend that families check whether they qualify for legal aid if they intend to avail themselves of the appeal or judicial review processes.

One parent told us that the head teacher of the school finally listened to him after SENDIASS gave him information about what his son was entitled to. He felt overwhelmed before and went with whatever professionals said was right, but now he feels like he can play an active role in his son’s SEN support as he knows what he is entitled to.

www.hampshiresendiass.co.uk

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Tommy and Maryanne Pilling A story of love, marriage, Covid, death, grief and…

Elvis!

Tommy Pilling: from dancing away in the kitchen early December 2020 with Maryanne, his beloved wife of twenty-five years, to a trip to A&E the next day that led him to be admitted to hospital for pneumonia where he subsequently caught Covid, to passing in the early hours of 1 January 2021. Two months later, he would have had his first Covid vaccine. If only…

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by Denise Humberstone (UK, mum of three, blogger at troynize.com)

ommy was sixty-two years old, three months short of his sixty-third birthday, a birthday the whole world celebrated with him every year: 21 March, World Down Syndrome Day! Tommy’s childhood and early adulthood were not ones to reminisce about fondly. He’d grown up in an orphanage after both his parents died and then went into care. Tommy’s life changed dramatically though, when at thirty-two, he met and fell in love with Maryanne in the kitchen of their training centre. She was nineteen. The next thirty years would then more than make up for the past thirty: overflowing with love, family, parties and music!

Elvis Presley was Tommy’s idol, and not a day passed that his music didn’t bounce off the kitchen walls that prompted joyful dance moves while cooking dinner!

With help from Maryanne’s mother, Linda, and sister, Lindi, they had a lavish and memorable (although controversial) wedding day five years after they met and later moved into a flat together where they were able to enjoy all the things mainstream couples do: pubs, cinemas, parties, bowling, et cetera… Full story here: https://makingchromosomescount.co.uk/team/maryanne-and-tommy/ 50

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Linda and Lindi lived nearby and were their full-time carers, loving them, facilitating their daily tasks, challenges and wishes, all from a distance they didn’t mind adjusting accordingly, invariably and gracefully. They were only too happy to organise their twentieth wedding anniversary as well.

When the pandemic hit in March 2020, Linda and Lindi reacted immediately: They were not about to take any chances and made sure Tommy and Maryanne shielded while trying their best to keep their spirits up for the next eight months. And it worked. Until that necessary trip to A&E that would seal Tommy’s fate…

Like so many others, they never had a chance to say goodbye. It must be said that Tommy was treated like royalty by the hospital staff right until the end, which reflected how much he and Maryanne were loved across the world before and after his passing: Cards never failed to pour in on their birthdays, thousands of cards were sent to them for Christmas 2020, and thousands more when Tommy passed.

By early April, Maryanne had received her two vaccine injections. Both times were emotional, a reason to

in the COMMUNITY

The Down Syndrome Diary

By Hayley Newman (UK, blogger, mum of 2, author, speaker, inclusion ambassador at Downs Side Up, linktr.ee/downssideup )

rejoice at finally feeling safe without a Covid sword hanging over, but also a reason to struggle to embrace that new life without her husband, who missed the opportunity of the Covid vaccine by just two months.

Maryanne celebrated her fiftieth birthday on 17 May. One she had big plans for with Tommy. She says what helps is that Tommy visits her in her dreams, and when that happens, she always wakes up with a smile on her face.

Their extra 21st chromosome may have set them apart from the mainstream population, yet their love, Tommy’s passing, and Maryanne’s grief are no different from anyone else’s. And just like anyone else who has experienced the loss of a loved one due to Covid, life just has to go on for Maryanne, somehow…

Rest in Peace, Tommy.

You can follow Maryanne on facebook.com/maryanneandtom

Eight years ago, new mum Jamie Freeman, from Detroit, sent a beautiful leather-bound journal out into the world, to connect with other families with a loved one with Down syndrome. Little did she know that the diary would eventually be turned into a book filled with all the stories collected on its travels: The Down Syndrome Diary.

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ike a message in a bottle, sent out on the crest of a wave to places unknown, new mum Jamie Freeman, from Detroit, understood that the beautiful leatherbound Down Syndrome Diary she had etched her innermost feelings into was now at the mercy of the tides. Or, more accurately, the families who were to become its temporary custodians and the international postal services who carried it between them.

What was clear, though, was just how much it meant to each and every person who held it in their hands and how seriously they took marking its fresh pages with words that would make a difference to others.

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“Thank you, whoever you are, wherever you are, for your words…”

The stories were told in a traditional fashion, one person opening their heart to another in a handwritten piece. The book became so unique and irreplaceable and the content so important as it slowly filled with personal stories, mementoes, photographs, and even tear stains, that it literally took on a life of its own.

So, when the doorbell rang at my home three years after the diary began its pilgrimage, I breathed a physical sigh of relief that it was safe as the post lady placed it in my hand. It was an ordinary enough looking parcel, but one sent with love and filled with messages and gifts of self-published books from the previous writers, photographer Oliver Hellowell, who has Down syndrome, and his mum Wendy.

As each diarist before me, I too felt the magnitude of wondering what to write. So I lived with the book on my desk for many days, letting the ideas percolate, just absorbing its energy before I dared put pen to paper.

What struck me was that everything I had to say had been said before. The wonderfully articulated tales of hope, unconditional love, initial shock, extreme pride, worry, challenges, joys, gratitude and everything in between were already laid out in ink. Recounted stories of birth, heart surgery, sibling love, starting school, learning new skills. It was all there. We all had so very much in common.

I smiled too at the realisation that having a child with Down syndrome seems to make us parents so driven, for so many families had started charities, published books, shouted from various media outlets about how fabulous 52

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their lives were.

And despite living across four countries and two continents, the threads that united us were far stronger than our differences.

In total, the diary would pass through twenty-six families and contain four vital contributions from people who have Down syndrome themselves.

So many of the young people with Down syndrome are trailblazers in their own right: models, artists, photographers, and actors.

But by far, their most important achievement is as teachers of life lessons to those of us without an additional chromosome. These young people are resilient overcomers from whom we have much to learn, and that shone from the pages.

The book also encompasses the experienced and wise words of seasoned parents who have beaten a clear path ahead for those of us who follow, alongside new parents’ thoughts, written while still foggy-headed from a mix of sleep deprivation and warm baby love.

Eight years on and the diary is available to buy in a full-colour coffee-table format, and proceeds are going towards copies that will be gifted to new parents and practitioners.

Jamie Freeman, from all of us, whether contributors or readers, whatever our personal situation and wherever we find ourselves in life, we thank you for bringing us and our words together…

You can follow on facebook.com/thedownsyndromediary

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www.ds-int.org

Down Syndrome International

The disparity in access to healthcare, education and information for people with Down syndrome around the world is staggering. Here is how DSi not only highlight these issues but try to address them.

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t Down Syndrome International (DSi), we have formed a global network of individuals and organisations. Our work is guided by leading international experts and key stakeholders who bring knowledge, experience and insight... not least people with Down syndrome themselves.

Our purpose is to improve the quality of life for people with Down syndrome, promoting their right to be included on a full and equal basis with others no matter where they live. Small but mighty, the work that we do will impact every person with Down syndrome around the globe!

Right now, in every country, people with Down syndrome experience discrimination. Here in the UK, many people with Down syndrome and their families have to fight for a good education or for a chance to prove their worth in a decent job. This is not okay.

There are parts of the world where children with Down syndrome are denied any form of education. This, in turn, precludes any hope of employment. There are communities where attitudes are so negative that people with Down syndrome are hidden away, and institutions for people with disabilities are still widely used. There are countries where there are no laws and policies in place to protect the fundamental human rights of people with Down syndrome.

This is not okay!

People with Down syndrome around the globe have experienced discrimination in access to information to help them stay safe, access to services such as education and, most alarmingly, access to medical treatment. At DSi, we have collaborated with the international disability community and supported our members to advocate for a disability-inclusive response to the pandemic in their countries.

We called upon the global Down syndrome community to CONNECT for World Down Syndrome Day on 21 March. We took their voices to the United Nations. There we identified the barriers preventing people with Down

in the COMMUNITY

syndrome from connecting and solutions to inform COVID-19 recovery plans. We explored strategies for inclusive education during the COVID-19 recovery and beyond.

We showcased solutions that will help to build a future where connecting is possible on an equal basis with others.

In Education, we are working to improve the availability and quality of education for people with Down syndrome around the world. In July 2020, our team published the much anticipated International Guidelines for the Education of Learners with Down Syndrome. The guidelines provide best-practice guidance for both learners and educators to promote life-long learning. We are now working with self-advocates, advocates of people with Down syndrome, professionals and affiliated organisations to implement the guidelines in countries across the world.

In Health, we are developing clinical consensus guidelines to improve the health of people with Down syndrome and contribute to the realisation of their right to health. In January 2021, the Journal of Congenital Cardiology published an article outlining the work we are doing with experts around the world to develop a global expert consensus statement on cardiac disease in people with Down syndrome.

In Advocacy, we are empowering individuals with Down syndrome to advocate for their right to meaningful participation in the work of organisations and for their right to employment. Globally, people with Down syndrome and intellectual disabilities are one of the most excluded groups from work and employment. For many people with Down syndrome, self-advocacy has a profound impact on their lives – providing them with the confidence to take control and participate in their communities with confidence.

If you like what you’ve read, please consider joining us as a member. There is no cost, and as a member of DSi, you can help to guide the work that we do, and you can help us to be heard. makingchromosomescount.co.uk

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Heidi Crowter’s Court Case

By Lynn Murray (spokesperson for Don’t Screen Us Out)

Heidi Crowter, a young woman with Down syndrome, is taking the Government to court to remove a clause in abortion law which she says is discriminatory and offensive to people with disabilities. of the Abortion Act “is offensive to many people; it reinforces negative stereotypes of disability… [and] is incompatible with valuing disability and non-disability equally”.

Heidi and her legal team have set up a CrowdJustice crowdfunding page to help raise funds for legal proceedings, pay for legal advice and prepare for the case.

Heidi Crowter said: “At the moment in the UK, babies can be aborted right up to birth if they are considered to be “seriously handicapped”. They include me in that definition of being seriously handicapped – just because I have an extra chromosome! Can you believe that?

What it says to me is that my life just isn’t as valuable as others, and I don’t think that’s right. I think it’s downright discrimination!

The United Nations Committee on the Rights of Persons with Disabilities recently said that the United Kingdom should change its abortion law to make sure that people like me aren’t singled out because of our disabilities.

“Sadly, the Government decided to ignore their recommendations and didn’t change the law. So now, I am going to take the Government to court with other members of the Down syndrome community to make sure that people aren’t treated differently because of their disabilities.”

Máire Lea-Wilson, the second client in this case and mother to Aidan, who has Down syndrome, said: “I have two sons, and I love and value them equally; however, the law does not value them equally. That feels so wrong to me, and so we want to try and change that.

“I find it difficult to think that Aidan’s life isn’t seen as valuable as his older brother’s. It makes me worry as to whether he will be seen the same or treated the same. I he High Court has granted Heidi Crowter permission also really worry that when he is older, if this law is still in to take forward her landmark case against the place, how will that make him feel? That he’s not as valuUK Government over the current discriminatory able? That he doesn’t have equal worth? abortion law which allows abortion up to birth for “Our case is not about the rights and wrongs of Down syndrome. The case goes to court on 6th July. abortion. It’s about the specific instance of inequality in the Heidi Crowter, a twenty-four-year-old woman from law, whereby for a child without a disability, the legal limit Coventry who has Down syndrome, has for abortion is twenty-four weeks, but you joined forces with Máire Lea-Wilson Our case is not about can have an abortion right up to full term from West London, whose twenty-onechild that does have a disability.” the rights and wrongs with a Lynn month-old son Aidan has Down synMurray, spokesperson for Don’t drome, to challenge Government over Screen Us Out, the campaign backing this of abortion. the current law. case, said: Máire Lea-Wilson was placed un“By stating that disability is grounds for termination, secder pressure to have an abortion when a thirty-four-week tion 1(1)(d) of the Abortion Act promotes inequality. It scan revealed her son had Down syndrome. would be totally condemned if a country’s abortion laws Currently, in England, Wales and Scotland, there is singled out babies on the ground of gender or skin colour, a general twenty-four-week time limit for abortion, but if but because it’s a disability such as Down syndrome, that’s the baby has a disability, including Down syndrome, cleft lip somehow ok? This is inequality, sanctioned, sponsored and and club foot, abortion is legal right up to birth. funded by the state.

The United Nations Committee on the Rights of “We live in a society that proclaims that we want to Persons with Disabilities has consistently criticised counempower those with disabilities and that regardless of your tries that provide for abortion on the basis of disability, background, you deserve a fair and equal chance at life. We and they have made a key recommendation that the UK believe that our laws must reflect this narrative.” change its abortion law so that it does not single out babies with disabilities. The Government has decided to ignore this www.dontscreenusout.org recommendation.

The Disability Rights Commission (now the Equality and Human Rights Commission) has said that this aspect

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Useful Links ​​Down’s Syndrome Association

downs-syndrome.org.uk

Singing Hands

Candidly Kind

singinghands.co.uk

candidlykind.com

Oliver Hellowell Photography

Zebedee

Making learning Makaton multi-sensory & fun for everyone. We believe inclusion and communication is everything.

​​Down Syndrome International

ds-int.org

Grace Key is a 23 year old very successful entrepreneur who sells t-shirts and other merchandise featuring her art and her very own inspirational quotes. She has Down syndrome.

​​Down’s Syndrome Research Foundation

dsrf-uk.org ​​Mencap

​​mencap.org.uk ​​Mosaic Down Syndrome

imdsa.org

​​Dont Screen Us Out

dontscreenusout.org

Wildlife and landscape photographer, with Down Syndrome, whose amazing second book “Oliver’s Britain” has just been published by ACC Art Books, following ‘Oliver’s Birds’ published 2 years ago.

Zebedee is a specialist talent agency created to increase the representation of people who have until now been excluded in the media, including people with disabilities or alternative appearances and trans/non binary.

oliverhellowell.com

zebedeemanagement.co.uk

Positive About Down Syndrome

positiveaboutdownsyndrome.co.uk ​​Stroke Association

stroke.org.uk

​​Soft UK - Trisomy 13 & 18

soft.org.uk

​​SIBS - For brothers and sisters

sibs.org.uk

Mallory Paige Designs

Amelia May Personalised Gifts

Beautiful jewelry designed by someone with a MAGICAL chromosome and handcrafted by someone who loves them. Each piece is handstamped with the initials of the designer who benefits via commission from your purchase.

I make personalised gifts, clothing (including Down Syndrome awareness tops) and I also do a full wedding range.

mallorypaigedesigns.com

Facebook: @ameliamaychangingattitudes

​​National Autistic Society

​​autism.org.uk

Advertise with us

​​Down’s Heart Group

dhg.org.uk

​​Learning Disability England

learningdisabilityengland.org.uk Carers UK

carersuk.org

Coalpit Welshcakes

Michael loves cooking and baking. He wanted his own business, we obliged!

Coalpit Welsh Cakes use the best local products to create great tasting and unique BLACK Welsh cakes.

Please contact us at MCCNews@gmail.com for more information

Coalpitwelshcakes.com

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