READ ABOUT THE EXPERIENCES OF 12 PEOPLE, ALL OVER THE WORLD, WHO HAVE HAD MOBILITY RELATED DISABILITIES
DLR Group Interior Designer, Amanda Collen, was awarded a Personal Development Grant through her work to pursue an interactive, in person exhibit related to accessible design. The exhibit allowed the general public to become more familiar with the ADA regulations and codes, become more aware of the obstacles found in the built environment, and learn about 12 different people who have disabilities and what they face on a day-to-day basis. This project aims to bring awareness to the disabled community and call attention to those who design the built environment. Why do we have codes? Are the codes good enough? What other things should be considered in order to enhance the human experience for ALL people. This document showcases the bios Amanda wrote after conducting interviews. Enjoy reading! Amanda Collen Designer | DLR Group
NOTE: this project only scratches the surface of the disabilites people face and how it relates to accessibility in the built environment.
PARAPLEGIC | QUADRIPLEGIC | SPINAL STROKE | BROKEN HIPS | OSTEOGENESIS IMPERFECTA | MUSCULAR DYSTROPHY | STROKE
ACCESSIBLE DESIGN AWARENESS
INSPIRATION Amanda’s aunt Kim has been a huge inspiration for pursuing this ADA design project. Kim has been quadriplegic since she was 16 years old and has an incredible story and perspective. As part of Amanda’s project, she decided to create a YouTube channel to share her process and progress during the project. She also interviewed her Aunt Kim, who is featured in Video 7 on her YouTube channel.
The interview part of the ADA project and creating bios was a extremely important as it provided a personal aspect and gave each of the 12 people a voice on what it is they have to say in regards to accessibility as it relates to design.
Scan QR Code to visit Amanda’s YouTube Channel
Personal Development Grant Process Create general design
Find a location and someone to build
Conduct interviews and start writing bios
Fine-tune design and implement gathered info
Conduct design presentations for feedback & revise design
Create construction drawings Create marketing material
Create signage and graphics Alex builds stations
Assistive Devices:
ELECTRIC WHEELCHAIR
MANUAL WHEELCHAIR
WALKER
CANE
CRUTCHES
HEARING AID
VISUALLY IMPAIRED / BLIND CANE
SERVICE DOG
Finishing touches & Install
Kim, TX quadriplegic Kim was sixteen years old when she was the passenger of a car accident where she broke her C-4 and C-5 vertebra and had surgery on her C-2-and C-7 vertebra, which are now fused together with wire. This all left her paralyzed from the neck down. Having her life change so drastically at such a young age took a lot of time to adjust. Right after the accident, she used a manual wheelchair because she was determined to get herself strong enough to use one. However, she started to struggle with it and although it was discouraging, she switched to an electric wheelchair after a couple of years. “I had to come to the realization that I was going to be using the electric wheelchair… it was difficult to see myself in it, but what I loved was the independence and the freedom that I suddenly had. And from that moment on, there was no stopping me.” Once Kim became more comfortable in the electric wheelchair, she saw so many possibilities for her future. She attended Texas A&M and said that without the electric wheelchair, she would have never been able to get around that massive campus. When Kim is in the wheelchair, she is nearly independent. It is when she must get out of the wheelchair such as going to the restroom, to bed, to stretch her back out, etc., that she relies on a caretaker, or her husband Phil. Kim has had many caretakers throughout the last thirty-seven years. They currently have one who lives at their house Monday through Friday to help with cleaning and cooking. “I need her hands to physically do the activities of making the meals.” Kim emphasized the importance of having a caretaker who is reliable. Their current one has been with them for the last fourteen years. Kim tells many stories regarding difficulties she has faced with the built environment. She recently took her dog to the groomer and could not get into the door due to the very high threshold transition. Because of this obstacle, Kim had to drop her dog off at the front door. This not only frustrated Kim, but the store owner was just as annoyed at the design of the threshold transition, so much so that the owner paid someone to come out and fix the whole door. Kim stated, “I like that he saw my frustration and it made him frustrated and he took action to fix it…. and it did not just help me but helped so many other people and could actually help his business further.” Another great story is one about a clothing store she frequently shops at for her son. The store recently expanded into the space next-door, and they told Kim that one of the reasons for the expansion was so that people like her could have more space between all the aisles and allow them to shop around the entire store. They even had Kim test it out once the expansion and re-model was complete. One of the biggest concerns for Kim is understanding the bathroom situation in the public places she visits. Sometimes it can be a deciding factor on whether her and her husband go to a place. The ideal bathroom would be a larger family restroom with more privacy and space for both her and her husband. However, that is often not the case. Another issue she has seen in restaurants is that the elevator can sometimes be placed in the strangest places. “A lot of times we go into a really nice restaurant, and we are dressed up, and we have to go through the kitchen to use the elevator to get to the second floor to our table… when you are really dressed up and you are going out… you really don’t want to walk through the kitchen.” The elevator may be convenient for the employees and servers, but the experience is not the same for Kim as it would be for other able-bodied customers. Kim also expressed her concern about ramps. She has personally fallen forward out of her wheelchair going down a ramp, “when Phil and I started noticing all the things that we do that are not accessible, and the risks, I started adding a seatbelt to my wheelchair for safety.” The angle of the ramp is so important, not just for ease of manually wheeling up an incline, but also for your safety so you do not fly down and fall out. Kim has overcome a lot in her life and has proved to be unstoppable. She was told by doctors that it was very likely that she would never get married and never have kids. Well, she did both and she continues to impress me with her knowledge, experience, and perspective. Be sure to check out the YouTube video featuring Kim.
Abby, AR stroke in spine Abby was extremely active during her senior year of high school in Fayetteville, Arkansas. “At nineteen, I was completely healthy and never had a hospital visit in my life and I was really big into sports, I played soccer and ran track.” One morning she woke up with excruciating back pain and started losing feeling in her legs, “Within an hour I lost all movement from my chest down, I could not feel the heating pad on my back.” Abby was rushed to the hospital where she underwent multiple tests to understand what was going on. Ultimately, they told her that she had a stroke in her spine from her T-2 to T-7 vertebra which is almost unheard of. “I am one of the few in the world who had it, and the only one who has at it at the age of nineteen.” She stayed at Washington Regional in Arkansas for ten days until they transferred her to a spinal cord injury rehab hospital in Colorado where she stayed for thirty days. At first, she seemed to be fully paralyzed from the chest down, but within the first ten days after the stroke her recovery began. She started having some toe movement, then movement in her ankles, then in her hips, and then she slowly started to re-learn how to walk. When Abby was first given the wheelchair she explained, “this wheelchair is giving me my life back, these are my new legs.” She enjoyed being able to move around when she wanted to and eat in the café or visit with family down the hall and play board games. However, she stated, “this wheelchair is offering me that freedom, but where the freedom ended was when the spaces around me did not accommodate my new life.” Some of the obstacles she faced most often dealt with door clearances and thresholds. “Trying to get over some of those thresholds was so embarrassing.” She also found it hard to navigate restrooms. Even if an ADA stall had the five-foot turning space as required by code, she would often need her mom to help her make the transfer to the toilet and it was tight with her, her wheelchair, and her mom. She also often wondered why the ADA stall is at the end of the restroom. “You have to roll past all of these stalls while people are trying to come in and out.” There are so many small considerations that designers and architects need to make when designing for people who are disabled. Due to this experience, Abby has a new perspective on life, “I am literally a walking miracle, but some people think that I am completely okay, but that is just not the truth.” She has developed three chronic “invisible” illnesses due to having the stroke a year ago. She is still learning how to handle everything that is now a part of her new life, “I have been in that state where I haven’t been able to move, I don’t ever want to go back there.” As she strives for progress, she also dreams of one day opening a bakery, “I want to open up a bakery that is tailored towards the disabled community. I want everyone to know that they truly have a seat at this table.” With the support of her family and friends, Abby has a very positive outlook on life and has been making the best of an unexpected and frightening condition.
Jarred, France paraplegic Jarred was twenty-one when he was in a car accident in Austin, Texas that left him paraplegic. When asked about the aftermath of the accident, Jarred stated that he experienced, “a period of mourning, and you have to re-adjust what your sense of person is. It is literally the mourning of what you were, which included walking around.” After some time, he realized that he is the exact same person that he was, he just had new limitations which required adjustments. Over the past twenty years, Jarred moved from Austin and has lived in Scotland, London, and now resides in France. He is a writer and an artist and has traveled to many different countries and has gained an appreciation for countries that are accessible. He said, “it is ridiculous how accessible Japan is… the US is pretty good because ADA is enforced.” He also noted that the Scandinavian countries are extremely accessible with Germany and the Netherlands next on the list. The countries he noted that are terrible when it comes to having and enforcing accessibility codes are places like France and Italy. For example, “In the U.S. when I rent a car, I tell them I am in a wheelchair and I tell them I need hand controls… as long as I do that within 24-72 hours in advance, it has never been a problem…in France, it is not even possible.” Jarred does not see himself as disabled. He has great upper body strength and can get around well. “Most of the time, I do not think about my wheelchair…I just go about my life, just as if you were left-handed.” The most common issue he runs into is nonaccessible restrooms. “Toilets are always the hardest, especially in Europe, because a lot of these buildings did not have them when they were built.” Jarred explained that often he can get himself to the toilet but is unable to close the door behind himself because of the lack of space for him and his wheelchair. Many older buildings do not have ramps or elevators, only stairs. Jarred can pop a wheely to climb anything that is twenty centimeters in height like entering a train, a curb, one large step, but the moment there are two or more small steps, it is impossible for him. Jarred intentionally has a very lightweight wheelchair that is less than nine pounds so that he can easily maneuver or lift it. His kids also like to sit in his lap to take a ride on the “Papa Trolley” occasionally when out exploring cities. Restaurants in the US are often more accessible than the ones in Europe due to the enforced ADA codes. “Restaurants tend to be okay, but the worst are the tables with the center legs and then with the feet and I cannot get close enough to sit close.” Retail spaces are usually okay, but there are often small bodegas (small grocery stores / markets) that are impossible to access in a wheelchair. In those cases, people are typically willing to help and assist you as needed. Jarred does not expect the world to bend over backwards to accommodate him everywhere, but he stated, “I am less patient than I was because these laws have been around for twenty years, if you wanted to make it accessible, you could have, but you didn’t care.” As I mentioned at the beginning, Jarred is a writer and has a new book that just debuted in 2021, it is called THE COWARD which is about a disabled character, and it mirrors a lot of Jarred’s experiences. Check it out!
Joe, MN stroke
Joe was fifty-eight and retired and was working part time shuttling cars for a car dealership when his stroke occurred. He and a co-worker were on a break. “We stopped for a cup of coffee, and I went to use the bathroom. When I was in the bathroom, I could not understand why my left hand was not working… and I just fell in the bathroom, and I did not know why… I lay there for a while…” His co-worker checked on him after he had not come out and he found him struggling to move the left side of his body. At the hospital, it was determined that he had a Cerebral Stroke and became left side impaired. A blood clot in his carotid artery was the cause of the stroke. Once that was cleared up, he was sent to rehab where he worked on his recovery for a few months. He claims, “it is a humbling experience when you cannot take care of yourself. It opens your eyes.” After rehab, he was sent home in a wheelchair but has since primarily relied on the use of a cane for his mobility. He cannot open or close his left hand or raise or lower his left arm. However, he can move his left leg, but is unable to bend his knee so when he walks, he has somewhat of a stiff legged walk. When it comes to navigating the built environment, he states that he can use stairs. But “one of the problems with stairs is that a lot of places will have railings on one side so if it is on the right side, I can go up the stairs, but coming down there is no railing for me to hold on to.” He uses ramps when they are available, but “the steeper they are, the more uncomfortable they are” because they can throw him off balance. “If it threatens my balance, I choose not to do it.” Uneven ground can be very difficult for Joe, especially if it is something like grass or loose carpet. Joe is from Minneapolis, but he and his wife often travel to Florida to escape the harsh weather. “Winters are impossible for disabled people.” When on road trips, they often stop at rest stops rather than gas stations because the restrooms are often more accessible at rest stops and are easier to access. When Joe is in a public place, he will often “look for the path of least resistance” and survey the space to recognize the danger zones and the safe zones. He has realized that “balance goes as you get older, so if you compound that with a disability it is very prevalent.” Heavy doors can also throw Joe off balance easily because he is relying on one side of his body for support. Many people who are not disabled can be unaware of the many factors that people like Joe must consider when navigating the built environment. “Prior to me being disabled, I was totally ignorant to it, it had never occurred to me.” He also stated that if you do not have confidence in a certain obstacle you are about to face, then the fear factor can creep in and then that obstacle can become extremely daunting. As designers, makers, creators, and members of society, we need to think about how we can minimize obstacles for people like Joe.
Steve, TX
broken back then became paraplegic A previous butcher and restaurant businessman, Steve is currently retired and lives on a lake in Galveston. He has broken his back twice. “I was a butcher full time and I overworked myself and ruptured a couple discs in my back and had surgery and the surgery went wrong and left me with a condition called Adhesive Arachnoiditis.” This left him with significant pain and agony as he would try to go about his day-to-day life and found himself using pain medicine to try and enjoy the activities in his life. Steve found himself paralyzed from the waist down fifteen years later due to an elevator accident in which the cables broke. “The second time I broke my back in the elevator accident, it actually gave me a better life than I had before.” This was because he was in so much pain after the first incident and now, because of his paralysis, he no longer feels the constant pain and discomfort. When discussing the challenges Steve has when navigating the built environment, he finds residential / private sector buildings to be harder to navigate than the public buildings. “We go visit all of my kids and none of them have an accessible home.” Steve and his wife also often go to downtown Galveston to eat dinner and he has learned to bring his own ramp with him so he can use it to enter older buildings that have steps in front of the entrance. When small business owners see him bringing his own ramp, they realize that they should have their own ramp for their other customers. Steve explains that “every place can have its challenges…” but “I cannot blame those small businesses; I was in the small business industry, and I understand the cost.” When they are out in public at the grocery store or at a restaurant Steve does not like being treated differently. “When people see you in a wheelchair, they bend over backwards sometimes to an uncomfortable degree.” This is a very interesting point of view that not everyone thinks about. Do people who use assistive devices want help? Or would they prefer to figure it out themselves?
When Steve and his wife’s house was destroyed by Hurricane Ike, they moved into a house closer to Galveston that they fully customized to Steve’s needs. He can go out on his boat by himself, go fishing off the dock, etc. Luckily, Steve also has a motorized wheelchair with a lift feature that enables him to sit at counter-height bars in restaurants. This gives him the ability to talk with the bartenders and more flexibility regarding seating. Despite everything that has happened to Steve, he indicates that he is living a better life now than he did after his first back injury.
Amy, TX paraplegic
Amy grew up in a small town. At age seven, she was in a freak car accident that left her paraplegic. “My hand brushed against my leg, and I realized I couldn’t feel my hand touch my leg, and I just knew.” Despite her life-changing injury, Amy became extremely involved in wheelchair basketball and other recreational sports, traveled abroad, and became involved in local organizations. She later was accepted into Occupational Therapy (OT) school, “I am not an OT because I have a disability, but the fact that I have been able to help people in such a unique way, it has become a huge blessing… I feel very fortunate and very blessed to help others.” After becoming so active with the recreational sports, Amy met her husband who is wheelchair-bound as well. He became quadriplegic after a car accident when he was seventeen, “Between me and my husband, we have fifty years of mobility impairment.” They are a very active couple and enjoy going to bars, restaurants, and theaters. However, seating and navigation can be challenging, so she has learned to call ahead, “there may be one accessible table and usually it has a booth on one side and chairs on the other side, but heaven forbid there are two people in a wheelchair that are somewhere together.” Amy and others in similar situations have had to learn to adapt and function in society. She strongly believes that the environment makes her, and others disabled, “The environment is what’s disabling. I am able to move, but if you put obstacles in my way, I am no longer able to get through.” When speaking to Amy about the obstacles that are most difficult, she emphasizes that it varies tremendously for people with mobility impairments. However, some of the main issues her and her husband face are in retail spaces and public restrooms. Clothing stores are extremely tough to navigate since the aisles are so close together. The dressing rooms are often not accommodating, as the bench may be right in front of the mirror and not allow enough space for a wheelchair to be in front of the mirror. Because of this Amy says she no longer bothers trying on clothes in dressing rooms anymore. In regards, to restrooms, it is often difficult to reach the soap, faucets, or the paper towel dispensers that are across the depth of the countertop. The ADA stalls are not always as spacious as they need to be for some people. “The ADA says this grab bar needs to be right here, but this person who needs help standing and sitting needs it a different way than the person who just needs it for stability.” Despite all these challenges, Amy has learned a lot and has made connections with so many people that she otherwise would not have. “I wouldn’t change it to be honest with you, I have a passion for it.”
Karen, WA
osteogenesis imperfecta Karen lives in the Seattle area. Her experience is different in that she has always relied on a wheelchair in her everyday life, “I grew up as a chair user, so it is the only way I have ever been.” Karen has what is called Osteogenesis Imperfecta, which is a genetic disorder where her bones are extremely fragile. Karen had to learn how to use a wheelchair at a very young age, so it became a part of her general childhood development, “Growing up with a disability is almost a different world than acquiring a disability either through accident or illness…” She explained that learning how to use the wheelchair was one of the hardest things to master when she was younger, but now her biggest challenge is dealing with her hearing loss that is also a product of her genetic disorder. Over the last twenty years it has progressively gone downhill. “Where it impacts me the most is in my ability to get information that is presented to me audibly.” Some examples she mentioned are when she is taking public transit, it is hard to hear the train or bus announcements, so she relies solely on visual aids. She also has trouble knowing which elevator arrives because she does not have directional sound. Since Karen is accustomed to navigating the built environment, she likes to focus her time on helping people learn and become exposed to people like her. She described a time when a four-year-old boy in a grocery store stared and pointed at her with a puzzled face. The father then told the boy to ask her some questions, her name, and ask why she is in a wheelchair. Karen appreciates when adults react in this way because it creates a positive learning opportunity for a child who may have never seen someone in a wheelchair or someone with a disability. “It is really important that kids have a positive experience around understanding that we are all different and if you have not gotten it in your books, or your family life, people in the community need to help you understand that.” Karen has an extreme passion for her work and sees it as something she loves to do. “I might be a chair user, but I am an architect first and foremost.” She had some challenges and had some people say she could not achieve her goals of becoming an architect, but when challenged like that she became even more determined to succeed. She posed many questions relating to the thought of how the design world could benefit if there were more people in the profession who were of varying disabilities. “I think people assume that you have to be very agile and strong in order to be an architect,” but clearly Karen proved everyone wrong. Think about that. If we had a more diverse group of disabled people who were architects, engineers, or interior designers, just imagine how much more accessible our built environment would become.
Kaylyn, TX
allergic fungal sinusitis, then stroke Kaylyn was twenty years old when she lost her sense of smell randomly for a few months. She went to multiple doctors, and nobody could explain what was going on. Finally, a nurse mentioned she should see a brain surgeon which is when she was diagnosed with Allergic Fungal Sinusitis. The doctors watched to see how it would spread and then declared she needed surgery. A couple of weeks after the surgery she had a few minor strokes and then she had a major stroke that left her paralyzed on her right side. “When I woke up, I had no use of my whole right side… it was all numb.” After about six months she gained some feeling back in her leg and partially in her arm. Kaylyn uses both a wheelchair and a walker depending on what she is doing, “my walking is a bit slow, so I use the walker for short distances.” Even though Kaylyn can walk some, she always prefers to use a ramp over stairs because stairs can be a hassle for her. A few of the biggest issues she runs into regarding the built environment would be heavy doors and placement of grab bars in restrooms. Since she is ambulatory and not fully reliable on a wheelchair or another person, she relies on grab bars in the restrooms to help with stability and transfers. However, if the grab bars are only on the right side of the toilet it can be extremely difficult to safely maneuver to the toilet because her right side is mostly paralyzed and unable to bare weight and be of support. I really enjoyed Kaylyn’s answer to the following question: “If money and time were not an issue, what would you create or change in order to help you navigate the built environment?” She explained that it would be neat to have a button you could push to have the obstacle that is in your way disappear. For example: you come up to a couple of steps and you push a button and then all the sudden the steps flatten out into a ramp. Kaylyn was in school when all of this happened, so it did force her to adjust the way she did things in and out of the classroom. She had to learn a different way of taking notes and completing assignments. Now she records every lecture she is in so she can re-listen to it later. She also has learned to type her notes and assignments since she can no longer write with her right hand. It has been about four years since the major stroke that left Kaylyn paralyzed on her right side and she has learned a lot and is continuing to adjust what she does on a dayto-day basis, due to her limitations. If only our built environment was more friendly to those who have more unique stories it could be more enjoyable for people like Kaylyn to go out and about like they used to.
Anna, OR paraplegic
Anna lives in Bend, Oregon and absolutely loves the outdoors and spends every chance she gets outside and being active. Anna was home in Portland for Christmas in 2015. Due to the rainy weather, she went to a climbing gym. “I was climbing in the gym solo… my last lap of the day I totally spaced and didn’t clip in and didn’t realize until I kicked off the top of the wall and free fell about 30-35 feet… that pressure resulted in a burst fracture of T12.” She became paralyzed from the waist down and had no idea if she would ever be able to walk again. Fortunately, after the first couple of weeks some feeling and function returned to her legs. At the time of the accident, Anna had been working in the field full time as a wildlife biology field tech tracking mountain lion, hiking and camping out of a backpack and a work truck. She expressed to me the importance of needing to get back outside and remain active, “my entire world revolved around movement and getting out and being in vast open spaces.” Through Anna’s journey and facing her new reality, she met some other young active female paraplegics and through them she discovered the world of adaptive sports and eventually got a grant for her own off-road three-wheel adaptive mountain bike. She said, “that was a pivotal moment, where I felt like I got my freedom and independence… having the ability to go out again without depending on someone else.” The young females she met often joke with her calling her a ‘para-poser’ because she is not fully paralyzed and uses a wheelchair, arm crutches, or leg braces. Some of Anna’s pet peeves with the built environment is when a house has 1-2 steps to get into the front door. She emphasized, “it drives me nuts… why isn’t it just flush, or a little ramp?” Another thing that bothers her is when waste baskets in restrooms require your foot to push it open. It is not uncommon for little kids to be surprised or point and stare at someone in a wheelchair. Sometimes parents will pull their kids the opposite way and tell them to not say anything, but Anna says, “telling them not to talk about it just reinforces this idea that we are a subset of people, and we are not the same, rather than teaching them that we are people, but we just move in a different way.” I think this is an excellent point. Not only are there things we need to improve regarding the design of the built world, but we can work on how we approach certain situations. We can work on making people who are disabled not feel like they are so different than able bodied people. That all starts with how we treat them.
Jennifer, FL
muscular dystrophy Jennifer lives in Orlando, Florida. For ten years she was a software engineer, having received her bachelor’s degree in computer science with a minor in piano performance. Music has always been a hobby for her, but she realized she could make it more than just a fun hobby after a life altering diagnosis came her way. Jennifer grew up with a brother who had muscular dystrophy. He was in a wheelchair by age ten and passed away when he was twenty-one. She knew that she was a genetic carrier for the disease but had no idea she also had a milder form of it. Muscular dystrophy is extremely rare in women: less than five percent of women who are genetic carriers develop the disease themselves. In 2009, fatigue was the first symptom Jennifer acquired. She was weak, dizzy, and tired far quicker than normal. She explained, “it took me about three years to get to the right doctor and they said, ‘you have muscular dystrophy, you have the same muscular dystrophy that your bother would have had.’” With muscular dystrophy it progresses over time, “my strength is being taken away from me and with that, functionality,” she had to learn as she goes. On a good day, Jennifer can walk within a fifteen-foot radius of her wheelchair, but on a bad day it can be extremely difficult to reach for items, stand up, etc. She begins to lose the strength and ability to use her large muscles in her body. After applying for disability and only being able to work part time, she reconsidered her career and shifted to creating her own music business since she does not need strength to play the piano. Her business became successful quickly. “In a span of less than five years of launching a brand-new music business, I was known in the local professional music community.” She is currently accepting her new reality of needing to stay in her wheelchair when playing the piano and singing. Within years past, she was able to sit at a bench, or on a stool, but she is beginning to need more direct support to keep herself upright. Jennifer does not have a caregiver, but she does have a four-year-old golden retriever service dog named Tonka. He was given to Jennifer for free through the organization called New Horizons Service Dogs. They have been together for about two years and Jennifer explained that he can do anything that involves tugging, pulling, or reaching. Some of the tasks Tonka does to help Jennifer is load and unload the washing machine, open and close doors, and pick up and bring items to Jennifer. At the grocery store he can even “pick up cans on the bottom shelf and get up on his hind legs and put them in the cart.” She likes to joke that if Tonka picks out a toy, she makes him pay for it because, she hands him the credit card and he can get up on this hind legs and hand it to the cashier. If you are interested in learning more about what Tonka can do feel free to follow Tonka on Instagram (@tonkatheservicedog).
Regarding the challenges Jennifer faces with the built environment, she expressed her frustration with heavy doors, spaces that are not wide enough, shelves that are not easy to reach, and the location of curb cuts and ramps. Her situation is different because it is not just her and her wheelchair navigating through spaces. She also has her service dog. She often finds herself outside of the entryway into a building waiting for a stranger to come by to open the heavy door for her and her dog. She wonders why more architects, designers, and builders do not incorporate or include a disabled person to “test drive” designs. She believes this could easily help solve or alleviate some of the obstacles she and others face in a day-to-day basis.
Jeff, AZ
stroke - right side paralyzed In 2011, Jeff and his wife at the time were driving home from Flagstaff, AZ pulling a thirty-foot RV with their truck. Suddenly, Jeff could not grab his can of coke. His wife noticed that his face was drooping, and his speech was slurring. The next thing he knew, the entire left side of his body was paralyzed. They were in the middle of nowhere, but not too far from home. By the grace of God, they made it home safely and immediately rushed to the hospital. The doctors confirmed that he had a stroke. “They took a CAT scan and they saw that I had a tiny white spot on the left side of my brain.” This stroke in the left side of the brain affected the right side of his body. “I was totally paralyzed… when we got home, I came crashing into the doors, running into the walls, and falling.” He went through intense physical and occupational therapy after the stroke and continued his exercises as he adjusted to his new reality. He uses multiple assistive devices: a power wheelchair, a custom scooter, a walker, and a cane. Jeff also had to re-learn how to write. “I had to learn how to write with my left hand... I was a righty for sixty years…” He learned how to be patient with himself as he climbed the learning curve of his new limitations. Jeff mentioned that he slowly began to realize the many obstacles that he never knew existed. Some of the biggest ones he faces are doors, location of curb cuts and ramps, access to his apartment laundry room, and small grocery aisles / lanes. Doors can be difficult for Jeff. “If they do not have the blue accessibility button that opens the doors, you have to open the door yourself… it is hard to open the door and still hold on to your walker.” He has noticed that at his apartment he has venture far out of his way to get to the curb cut or ramp to the parking lot. When he is using his walker, that extra distance can cause him to tire easily. In his apartment, the laundry room is right off the kitchen, but one of the two doors to access the laundry room is blocked by the refrigerator so it is extremely difficult to enter. He manages, but he is considering discussing alterations to that area of his apartment with the building. There have been a couple instances where people temporarily park a golfcart or other items on the ramp / curb cut and he has no way of getting down in his scooter or wheelchair. This frustrates Jeff because it shows that people who are able-bodied can be oblivious to how their actions affect those who rely on the accommodations provided for them. In grocery stores, he also runs into shoppers leaving their cart in the middle of the aisle and he cannot get past. One of his biggest complaints about grocery stores is the size of the checkout lanes and the inability to comfortably navigate through the clothing racks / aisles. Jeff hopes that people can become more aware of their surroundings and understand how their actions can affect those who are disabled. He appreciates his daughter and other family members for their support, “she [daughter] is so sweet in doing everything she possibly can to assist me when I am going out with her to lunch… she is an angel.”
Kevin, TX
two broken hips, double hip surgery
Kevin is from the DFW area and lives in Dallas as a twenty-eight-year-old working professional. However, he has a unique story. He had always been an active athletic guy who could run a subfive-minute mile. Because of his athletic ability he was recruited to West Point Military Academy, “At West Point they make you test your physical abilities every six months, and it counts towards twenty percent of your GPA at the school.” He worked out all the time and was the captain of his cycling team in college. He ended up graduating from West Point and went to Colorado in a ground soldier unit. Within the first few weeks of being in Colorado he received a call from head officials who said, “we scanned all the incoming officers based on their run time, and we picked the top ten and you are all going to Afghanistan in six weeks.” Shortly after graduation, Kevin deployed to Afghanistan with a team of about 100 soldiers. There was a nighttime mission with about two dozen guys in a chinook (big bus-like helicopter) who flew about an hour and needed to get off really quickly, “My group of twenty-three guys got really excited and started pushing towards the back of the ramp and I got pushed off the back of the chinook from about five feet off the ground and I fell to the ground, but with an extra 120 pounds on my back…. when I landed, I felt a crack in my hips, and I crumpled.” You would think Kevin would have needed to seek medical attention immediately, but he explained “I got a job to do… so I take a knee… and get up and go.” He was leading the crew and he was the only guy who did what he was specifically trained to do. He stated, “I was in a position where I got to do actual combat missions and that is like five percent of the army now. I got lucky… if you are that lucky you do not want to give it up.” Now fast-forward about one year. Kevin had been in pain but was still excelling at leading teams. He was looking to apply for the Special Forces, but during the required physical was unable to sit crisscross. The doctors told Kevin he needed to get an MRI of his hips. “What I didn’t know is that I had fractured my left hip socket, I had cracked it open, and then on both sides I tore my cartilage and my labrum… it was bone on bone.” This led to him needing two reconstructive hip surgeries. Kevin then relied on a wheelchair and crutches to do his daily routine. He realized how hard it was trying to open the door to his apartment complex while in a wheelchair, how much longer it took for a trip to the grocery store, how difficult it was to unload the car full of groceries by himself in a wheelchair, and the list goes on. He found it interesting to see how people treated him differently when in a wheelchair vs. on crutches, “When I was in the wheelchair, no one would help me, because I think they felt awkward and they did not want to make me feel bad… they genuinely did not want to interrupt my day if this is my normal day, every day….” However, when you are on crutches, he said that as a twenty-five-year-old healthy guy everyone helps you because they think you have temporarily broken your foot or knee because of a sports injury. “I would use crutches just so I would not get all the awkwardness even though it was probably healthier for me to be in a wheelchair.” Kevin found himself traveling a couple of times during his recovery, and experienced being in a wheelchair at the airport, “You take it for granted when you can say ‘I have a roller, a backpack, and I am carrying a duffel on my shoulder’.” He had to carry all of that in his lap while in a wheelchair. He also realized that there are so many escalators, but not as many elevators, which made it difficult to go where he needed in a timely manner. Although it was difficult and very different traveling in a wheelchair at the airport, he did say that the airport staff were extremely accommodating for him once he arrived at the gate. Since Kevin’s situation was unusual in that his disability was temporary, he has gained a greater respect and understanding for those who are permanently disabled. It opened his eyes to many obstacles he was unaware of before this experience. He says that now if he sees someone in a wheelchair, he always offers to help because he wished he would have had more help when he was in a wheelchair. Kevin stated, “the two biggest takeaways would be how people treated me….the second one was the time it took you to do different things.”
Kevin brings up a great point. Just because someone uses an assisted device, does not mean we should treat them like they are incapable. However, we need to become more aware and offer the support and assistance when needed.
Where to Learn More: The Coward - Jarred McGinnis After a car accident Jarred discovers he'll never walk again. Confined to a 'giant roller-skate', he finds himself with neither money nor job. Worse still, he's forced to live back home with the father he hasn't spoken to in ten years. Add in a shoplifting habit, an addiction to painkillers and the fact that total strangers now treat him like he's an idiot, and it's a recipe for self-destruction. How can he stop himself careering out of control? As he tries to piece his life together again, he looks back over his past - the tragedy that blasted his family apart, why he ran away, the damage he's caused himself and others - and starts to wonder whether, maybe, things don't always have to stay broken after all. The Coward is about hurt and forgiveness. It's about how the world treats disabled people. And it's about how we write and rewrite the stories we tell ourselves about our lives - and try to find an ending.
What Can a Body Do? - Sara Hendren Furniture and tools, kitchens and campuses and city streets—nearly everything human beings make and use is assistive technology, meant to bridge the gap between body and world. Yet unless, or until, a misfit between our own body and the world is acute enough to be understood as disability, we may never stop to consider—or reconsider—the hidden assumptions on which our everyday environment is built. In a series of vivid stories drawn from the lived experience of disability and the ideas and innovations that have emerged from it—from cyborg arms to customizable cardboard chairs to deaf architecture— Sara Hendren invites us to rethink the things and settings we live with. What might assistance based on the body’s stunning capacity for adaptation—rather than a rigid insistence on “normalcy”—look like? Can we foster interdependent, not just independent, living? How do we creatively engineer public spaces that allow us all to navigate our common terrain? By rendering familiar objects and environments newly strange and wondrous, What Can a Body Do? helps us imagine a future that will better meet the extraordinary range of our collective needs and desires.
Disability Visibility - Alice Wong One in five people in the United States lives with a disability. Some disabilities are visible, others less apparent—but all are underrepresented in media and popular culture. Now, just in time for the thirtieth anniversary of the Americans with Disabilities Act, activist Alice Wong brings together this urgent, galvanizing collection of contemporary essays by disabled people. From Harriet McBryde Johnson’s account of her debate with Peter Singer over her own personhood to original pieces by authors like Keah Brown and Haben Girma; from blog posts, manifestos, and eulogies to Congressional testimonies, and beyond: this anthology gives a glimpse into the rich complexity of the disabled experience, highlighting the passions, talents, and everyday lives of this community. It invites readers to question their own understandings. It celebrates and documents disability culture in the now. It looks to the future and the past with hope and love.
Code books for reference: