HANNAH’S HOPE

My name is Hannah Deakin and I am 29 years old. I started my blog, Hannah’s Hope, in January 2018. I have been blogging for about two and a half years now and am still learning about it everyday! I am a disability and lifestyle blogger. I am passionate about making a difference, changing perceptions and promoting equality. I have been disabled since an injury at the age of 14, causing Complex Regional Pain Syndrome and many secondary complications and illnesses. I spent most of my teenage years in hospital and I am a powerchair user. I hope to raise awareness and increase understanding through the non-disabled community, and provide support to other disabled and chronically ill individuals, so they don’t feel alone.

I blog about my experiences, events I have attended, feelings, achievements and share information that may help others. I have written about: The Superhero Tri, AAT (Association of Accounting Technicians), graduating, Winchester and how accessible it is, tips when speaking to wheelchair users and disabled people, how it feels to be a young disabled person, and grief. The list goes on.

Initially, it was suggested to me about writing a blog by a family friend, when I was probably 16 years old and bedbound in hospital. I had been an inpatient for about a year and I thought “what would I write about each day?” I would end up just writing that I had been in pain every

day. I thought people would get bored. Furthermore, who would read it? It was not until ten years later that I actually started to write my blog.

It was at this point, in January 2018, I realised there is so much more that I could write about. Being able to get out in the world, most definitely also helps a little. I am able to go to places and do things, I am finding out information and want to share it, to make it easier for others. I have also finally written a few interesting stories from my life in hospital over the four years as an inpatient. The great thing is that people are reading my blog, even though my search engine optimisation (SEO) skills still need practice, after two and a half years I am only just learning about labels/tags and many other things. Many people have also contacted me and commented on how helpful and insightful some of my blog posts have been.

I have had quite a tough journey, and from personal experience I believe you need to have hope. If you don’t have hope, what do you have? Hope has kept me going through some very difficult years. I have hoped that the future would be better. I now hope that I will continue to improve and gain more mobility and independence. We hope the situation with the coronavirus pandemic will improve soon and our families will stay safe. Hope is a powerful mindset which is why my blog is called ‘Hannah’s Hope’. I hope I am making a difference.

I find it helpful for myself to write things down, process things and get them off my chest. It is therapeutic. It can be a way of expressing things that are difficult to talk about. I hope that I am making a little difference and having a positive impact on the world. This is a big thing for me, and something that I feel passionate about. It has also connected me with a great group of like-minded individuals. Other disability and chronic illnesses bloggers. I think together we make a wonderful community. A community that is very supportive of each other. I have had many opportunities come up as a result of my blog. I have written guest blog posts for Scope and other blogs and websites, I have written articles for magazines, been a guest on a podcast, delivered speeches and have been the subject of a case study. I believe, my recent TV appearances on Channel 5 and Sky news and the article I wrote for the Sky news website were partly linked to my blog, as others became aware that I am passionate about speaking up and making a difference in the disabled community.

A couple of months ago, during lockdown I started doing a journalism course part time via Zoom. This opportunity opened up to me through Ability Today (a social enterprise scheme that supports disabled people) working in conjunction with the NCTJ (National Council for the Training of Journalists). Hopefully, it will enable me to improve the quality of my writing and blog posts, as well as improving my technical knowledge of SEO.

We are well into the throes of summer and, while the landscape of the country is looking pretty different to the usual few weeks of adventures and chaos as the kids take a break from school and education, there is still plenty of mischief to be had.

Many families will still be remaining cautious as we ease out of lockdown, so this issue we take a look at some adventures you can embark on as a family without being in heavily populated indoor areas. Summer is all about being outdoors anyway, so look out your sunscreen, and your wellies – it is Britain after all – and start discovering the beautiful countryside on your doorstep. Take the time to teach your kids about nature and play treasure hunts in the forest, or simply get imaginative with games and picnics in your garden.

Whatever you do, make the most of the summer months in a way you all feel comfortable with and that you know is best for your family.

You will find Dan White’s regular column on page 57 where he discusses the impact the pandemic has had on our health service and our disabled children, and more products for your little ones appear on page 58.

As always if you have anything you would like to share with us and other parents please don’t hesitate to get in touch by emailing ros@2apublishing. co.uk.

pg 58

BY ROSALIND TULLOCH

ntertaining the kids may be a little trickier this summer, but there are still lots of fun adventures that you can take them on before they return to school this year.

Getting out and discovering nature is not only enjoyable, but an important part of our lives. Nature and wildlife must be protected, particularly now as we find ourselves in the throes of climate change and endangered ecosystems. We need to teach our younger generations to cherish the world we live in and there is no better way than to start with the wildlife and beauty on your own doorstep. The Wildlife Trusts is a grassroots movement of people from all walks of life who are actively working to make a positive difference to wildlife and future generations. They are dedicated to opening up nature reserves and country walks to people of all abilities and they have a section on their website that highlights and describes the most accessible nature reserves with great access and facilities for wheelchair users.

These areas are real adventures for all the family. Why not try some bird watching with your kids or take a list of items that you need to find in the forests, from leaves and flowers to spotting squirrels or insects. If you find them all then everyone can be treated to an ice cream at the end!

Discover the closest accessible nature reserve to you by visiting wildliftrusts.org.

You may feel like the white sands and crystal clear water of other countries are currently outwith your reach, you may have even had a holiday cancelled during this pandemic, however we are here to tell you that the UK is home to some stunning beaches – just make sure 500,000 people have not flocked there all on the same day. Beaches can pose a problem for anyone using a wheelchair or powerchair in terms of access, but sometimes you just want to be by the seaside taking in the view, enjoying an overpriced ice cream (why do they still call them 99s when they cost £3?) and feeling the sea air on your face. Discovering beaches with flat promenades, Changing Places facilities and nearby accessible walks or parks can be just as important when you are taking a trip to the coast. Depending on where you live in the UK a quick internet search for your closest accessible beach should not take too long. Most local authority websites have dedicated sections highlighting the provisions and access on offer at the local beaches. These can include hiring facilities for allterrain wheelchairs to allow anyone to get onto the sand, level access, ramps, accessible parking, disabled toilet facilities and more.

If you get the weather for a day on the beach in the UK, it is sometimes hard to imagine why we ever dreamed of travelling abroad. Especially when you can get a great fish and chips on the way home.

Still self-isolating or shielding? No need to worry, if you have access to a garden then you can make the most of the sunny days without the worry of being out in public spaces. Gardens are the perfect space to get imaginative, enjoy the sun, and maybe start a water fight. Picnics are an immensely popular idea with kids, the chance to sit on a blanket on the grass and eat your lunch outside is confusingly exciting to them and the preparations are just as fun. Mum and dad can even allow themselves to enjoy a gin and tonic in the sunshine as there is no driving to be done.

Water-related games and paddling pools are what make up a British summertime in the garden. It would be wise to invest in a paddling pool, water guns, water balloons, or even a sprinkler that essentially waters your plants while amusing your kids at the same time when they jump through it or race away from it. Small water balloons can start off an epic battle that can fill a whole afternoon, but if you don’t have any you can just fill small plastic cups or tubs with water and line them up for your throwing pleasure. You will be soaked at the end, but at least you are at home with easy access to towels. You can also set up your own games and races in the garden to suit any ability, why not start your own mini Paralympics? Races, throwing games and things like skittles can be easy to set up and great fun, you can even make some medals to give out at the end. Whatever you do this summer, just make sure you all have fun together and make some happy memories. It has been a stressful time for families, especially those who have lost the support of services, carers and family support, but there is hopefully a light at the end of this long tunnel that will brighten our days and bring some form of normality back into our lives. Stay safe and enjoy your summer.

It’s fair to say the care community has been the victim of much political duplicity these last few months. I am talking not only of our selfless NHS staff who are taking on the enemy of COVID-19 armed with only bin liners and caffeine, but everyone who works in care; from social care and care home staff, to ourselves as parents. Healthcare in Britain was not prepared for this pandemic. I know this is not news, but it needs to be said. Social care and the NHS are decimated and both are floundering like stranded fish on land. The march of COVID-19 has torn through the tissue-thin layer of whatever healthcare protection was left for our disabled children and I am rightly furious. Was this avoidable? Yes.

In October 2016 operation Cygnus took place which was an exercise based around a pandemic. Findings showed that the UK was not prepared to cope with the demands of such an event. This should have shocked the government into action, but it did not. This aversion to action meant healthcare was short of what it needed and that meant the trickle-down effect would have a terrible lasting knock-on effect for our disabled children. The once normal routine of our children’s appointments, social care, physiotherapy sessions, and operations were badly affected by the fallout of the NHS struggling unprepared. This all exponentially increased the strain on us and our children.

The few remaining good souls left within the care system, once stretched too thin in normal times, were now overwrought and unavailable to most of us in lockdown. My daughter has been isolating since March and to see her mental and physical decline is heartbreaking. Where once there was empathy and investment there is now only silence, families buckling, and the ignorance of the state to the crisis in our homes caused by their indecision. Errant scientific advice and slow political reaction have failed to protect the disabled community. Hindsight is a wonderful thing I know, but logic is too. If the administration wants an example of their lack of foresight, then read on.

My daughter was due a scoliosis operation in June, but due to the strains on our healthcare system, this was postponed, again and again, the system was overwhelmed (unnamed sources told me as much). This meant her spine was curving more, causing her incredible pain. We could only watch her growing discomfort, her wheelchair now unfit for her posture. An operation date was only finalised at the time of writing. As an autistic child petrified of operations, the news that only mum could go with her, that she would be in the hospital for 10 days, recovering in intensive care alone and with me not allowed anywhere near her, has broken all our hearts. The exposed wound of minimal health investment has touched us all, disability especially. It does seem that our children are always disproportionally affected by external events. It’s a Shakespearean tragedy when a government does not believe in our children’s importance in a society that still sadly values production over people. Lessons must be learned from COVID. We cannot return to a care system hanging on by its financial fingernails. Looking after every citizen equally is morally correct. Protecting the population is not just about military solutions, an effective healthcare system is the most important defense we have. If you are reading this from outside the disabled community, come see the results of years of care underfunding, now exacerbated. See our children last in line, be witness to my child’s decreasing health, then you’ll believe me.