Girl in wheelchair sitting outside.

When People Say 'I Don't See Your Wheelchair'

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This might surprise a lot of people, but it bothers me when someone says they don’t “see my wheelchair” or my disability. It’s taken me a number of years to figure out why this bothers me so much. Of course, I want people to recognize my humanity first, right? Of course, I want my friends and family to see me – the weird, “Lord of the Rings” loving, occasionally overly-emotional, funny, theology nerd they’ve known for 30 years — first, right? Right!

Lisa Hefferman.
Lisa Hefferman.

But here’s the thing: having been born with spina bifida and being a full-time wheelchair user has shaped me and who I am in the world. The fact that I have a disability is a part of my reality I want others to see! That’s because, along with the wheelchair, they will see a young woman whose father’s death due to complications of multiple sclerosis has driven her to continue his work of advocating for people with disabilities. They will see a sister and daughter who would not have completed college or seminary without the encouragement, pushing, and support of her mother and brother. They will see a disability theologian and pastor who would not have been open to the work of the Holy Spirit in her life without friends who said, “You’ll become a pastor. Just wait.” or “the Church needs to hear your voice.”

In the end, “the thing” is that I would not be the person I am without my disability. Sure, I have bad or “down” days (sometimes weeks) because of the physical and relational struggles that have come along with it. It would be foolish or dishonest to say that I don’t sometimes wish I hadn’t been born with spina bifida when I have one of those bad days. As I get older and have begun to own who I am and all I’ve been through, though, those days don’t come as often as they did when I was a child. Today’s struggles are like those of a lot of women who are my age: trying to discern what comes next in my early 30’s as I hope to take a new direction in my vocation, and figuring out where future relationships and family fit into that. I just get to navigate those things sitting down, rather than standing up!

As I navigate this life from my wheelchair, my hope and prayer is that the “-abled” world around me can understand this: When you tell me (and perhaps others like me) that you don’t see my disability, we may hear it in a way other than you intend. For my part, I hear you saying: “Having a disability is bad, and something to be pitied or unwanted. You’re more than this negative thing in your life.” The message that comes across is that others believe I hate my disability, so I must want it to be forgotten about so I can be viewed as a whole person by others.

Newsflash: I am a whole person. All persons with disabilities are “whole.” Our realities don’t match up with a world that looks to ridiculous standards of beauty, wealth, and physical and mental perfection in order to be seen as a whole person — as fully human. And you know what? That’s OK! People with disabilities have the same range of emotions, desires, and aspirations as those without disabilities. The problem is that attitudes and structures exist which limit how we can participate in the world. That is maddening and heartbreaking for me, not just because of my own life experiences, but because I know so many people with disabilities who could live into the fullness of who I believe God created them to be if the “-abled” world would open up even just a little bit more.

Great strides have been made with that since the ADA was passed, but we are still far, far from true equality and inclusion in this world. I don’t know how to fix it or make it better, but I feel called to help do that someday. I’ve made a start or two to “get my wheel in the door,” so to speak, but I’ve got a long way to go. So, when you see me or someone like me, please don’t assume I need you to validate my humanity by downplaying my disability. Nor do I need you to start believing the negative stereotypes that make people with disabilities seem helpless. Just get to know me — spina bifida, wheelchair, nerdiness, and all — and see that my life is not to be pitied – or something “inspiring” either! It’s just my life, one I want to live as freely and interdependently as I can. It hasn’t all been bad so far, and it wouldn’t be what it has been or will be down the road, if it weren’t for this speedster that helps me down that road — my wheelchair.

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My Experience Learning to Drive With a Physical Disability

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For many people their 17th birthday means more independence, and learning to drive is at the top of the list. For someone with a physical disability this is no different. For many people with physical disabilities, independence feels even more important; perhaps this is why I crave independence and strive to achieve my very best.
To learn to drive, the first thing I had to do was to apply for my provisional driving license. I filled in the form as usual, the only extra thing I had to do was visit my general practitioner who the driving license agency contacted for information about my condition.
When I got my provisional driving license I was advised by the driving license agency to have a driving assessment at one of their assessment centers. I knew that if I was told I couldn’t drive I would have to accept it, and as my condition doesn’t change, a no would be a permanent no. I remember feeling nervous but trying so hard to keep calm. A driving instructor and occupational therapist carried out the assessment, which included them talking to me about my disability, what movement I had, a startle reaction test and if I had any driving experience. I had some experience thanks to me dad letting me drive his car around a field.
After this, I was allowed to go for a drive; it was both even exciting and scary. I had a driving instructor, an occupational therapist and I asked my dad to come with me. I drove around the industrial estate; I had thought it would be an off road but no, I actually drove on a road. After some static practice of changing gears it was time to drive. I was told what to do by the instructor with the occupational therapist assessing if I could safety control the vehicle. I drove around, did some steering around posts, then it was time to go back for the debrief. I remember them staying that I should book some lessons. The recommendations were that I should try a few lessons to see how I managed. They also suggested an easy-release hand brake and a seat belt extension, although in my own car I do not have these as when nobody is watching me I can do the seat belt, and only have a problem with the hand brake if someone borrows my car.
As soon as the report arrived I booked my first lesson. The report recommended driving instructors; I chose one and stayed with the same person. To be honest, I didn’t really enjoy my first few driving lessons. There seemed to be so much to remember and do all at the same time. Some lessons I really enjoyed and felt like I was making progress; others I felt like I was never going to get it. However, the more lessons I had, the more I enjoyed them and the more confident I became.
After about a year or so I decided to buy my own car so I could get more practice. This really helped, although it can be difficult switching between two cars. After failing my second test and discussion with my instructor I decided to just drive my own car for all my lessons. I passed my test fourth time around on March 14, 2011. I don’t remember the whole test route. I had the option of having my instructor sit in the car; I didn’t do this on my first two test, but the next two I did. I think it’s good to have your instructor in the car, as if you don’t pass your driving instructor will know the areas you need to practice. The one thing I did differently was most instructors recommend a two-hour driving lesson first, but as my cerebral palsy means I use two to three times more energy, it was better to have a short practice and break before taking my test.
After passing my test I drove on my own as soon as possible. I started with short familiar routes, gradually building up my confidence. After about a year I changed my car. When I bought both of my cars, the most important aspect was the driving position. For me personally, I like to sit high. Only you can decide the best driving position for you, so try options until you feel comfortable. It’s difficult when you’re learning in an instructor’s car; you have to change the seat, steering wheel and mirrors. It can take a while to find the best setup, but remember when your have your own can you won’t have to keep changing it.
If you use a wheelchair or other walking aid, ensure you can easily fit your chair or walking aid in your vehicle. I bought the car then tried to find a chair to fit the car. I found one in the end, but I would carefully consider the size of the car if you use a walking aid or wheelchair. If you are in the U.K. and receive Disability Living Allowance or Personal Independence Payment, you can use part of your allowance to lease a car. For me it worked out better to buy my car and use my allowance to run the car.
I have now been driving for six years and I love the independence driving has given me. If you are reading this and have a physical disability, I would encourage you to take the first steps to getting on the road.

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Thinkstock photo by Wavebreak Media.
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Alto Creates First Advantage Club for People With Disabilities

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Military veterans have advantage clubs, senior citizens get discounts through membership-based programs, so why not offer something similar to people with disabilities, Moshe Gaon asked himself when founding Alto, the first advantage club for people with disabilities and their families. Before launching Alto, Gaon founded yoocan, an American-Israeli company designed to educate and motivate people with disabilities and their families.

Now, Gaon has taken the company’s mission to empower those with disabilities one step further by creating a membership-based program that provides exclusive discounts on products designed for people living with a disability. “There are many products and services people would love to get advantages on,” Gaon said. “But everything is scattered and hard to find.”

Both yoocan and Alto were inspired by Gaon’s family’s experience, after his nephew was born with a rare disease. “Families with disabilities spend more money than other families,” Gaon told The Mighty. “We have special needs, need special insurances.”

Alto works by aggregating services that already exist for people with disabilities – like free wheelchair rentals at popular attractions – as well as offering exclusive discounts on products geared towards people with disabilities. Alto works with vendors to negotiate special discounts on products for its members.

Services aggregated by Alto can be viewed for free by anyone accessing the site. Those interested in buying products will have to become a member. Membership is offered on a trial basis of $4.95 for 30 days or $59.90 per year ($4.99 a month).

Products currently available include sensory-friendly toys for kids and adaptive living products. “Usually the savings on one or two items justifies the cost of membership,” Gaon said. Average discounts range from 5 to 20 percent off.

“There’s nothing like this for the disability community in the U.S.,” Gaon said. “There should be a solution that will allow people to be empowered and get the amazing benefits and discounts they deserve as a community.”

Anyone in the world can become a member, Gaon said. However, Alto only works with American vendors at this time, meaning those outside of the U.S. would need to check that the item could be shipped internationally.

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When Disability Gets Left Out of Conversations About Privilege

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Recently I saw an article about privilege. This article used a list asking people to step forwards and backwards, according to instructions, to visually represent the privilege and disadvantages they face.

Do not get me wrong: I think that pieces like this are important, and I think this one is effective, but I do have one problem with it. Despite a total of 35 instructions, not a single one said anything about disability.

Most of the points included related to gender, religion, race, sexuality, or socioeconomic status. Disability or illness did not even rate a mention.

I think most of us who have experienced illness or disability would agree that it is often a huge societal disadvantage. Having a disability can often impact our ability to work, or our chance of getting a job when compared to other applicants. It can limit our access to certain places or events, and result in judgment and ridicule. For those of us with invisible disabilities, it can also cause us to be verbally attacked for use of facilities such as disability toilets or parking spaces. Disability often results in marginalization and disadvantage.

Articles like this one, and there are many like it, give us a good insight into the disadvantage and privilege in people’s lives, and are important in sparking the beginnings of social change. But disability remains a point of such disadvantage that it is often not included, even when it is disadvantage we are talking about.

I want to be included. I want to see people like me represented in media, in toys, in television and film, and in articles, surveys, and social experiments that center around disadvantage. Disability is a disadvantage in society, and by not talking about it, it becomes even more so.

I appreciate articles like this one because they matter, but I would like more of them to acknowledge that I and others with disabilities matter too. Include us in that which affects us just as much as the other groups targeted.

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5 Intersections of Being Queer and Disabled

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I came out as a lesbian when I was 13 years old. I have also had cerebral palsy for my entire life. When I first realized I was queer, I wondered how on Earth I could possibly have two marginalized identities like that at the same time. “Is it really possible to be both gay and disabled? What are the odds? There must be no one else who is both of these things.” I was genuinely baffled that such an intersection could exist – in part because I knew few examples of anyone else who was even gay at the time – let alone anyone who also had a disability.

Over the past few years, I have learned about the intersections between having a physical disability and being queer. These two identities connect with one another in ways I would not have expected. I have labeled these intersections into five categories.

Isolation

Both of these identities are generally not ones you have in common with your family members. You will most likely be the only one in your family with your disability or who is gay (with some exceptions of course!) This is noteworthy for a couple of reasons. First, for many other marginalized identities, such as race, class and religion, people often share them with their family. This can help young people immediately have a community as they grow into their identities, and as they are forced to navigate the ways society stigmatizes and discriminates against them because of those identities.

But when I came out as queer, no one else in my family identified as such. No one in my family has a disability – let alone cerebral palsy. If I could have asked my dad about how to navigate coming out to my classmates, or if I could have asked my mom how to navigate puberty growing pains while having cerebral palsy, and they could have responded from firsthand experience, that would have helped me so much. While my family always supported me, they did not understand how I felt or the experiences I had. This made it very lonely and isolating to possess both identities. It took me years to find friends who share these identities – and I still don’t know anyone who is both queer and who has CP. When I realized I was gay, it felt like one more identity I did not share with my family.

Dating

The second way these two identities intersect for me is in the world of dating. As a queer woman who was trying to find a girlfriend before apps like Tinder and OkCupid existed, I felt compelled to occupy spaces like gay bars and clubs in order to find someone to date. Not only that, but in order to impress anyone in these spaces I felt like I needed to dance in some type of “hot” or “sexy” way. The music was always too loud to engage anyone in conversation, so you had to use your body to get their attention. Not only was it hard if not impossible for me to dance, but oftentimes I could not even access gay bars because stairs and a ton of standing were required, which is too painful with my CP. For many years, I felt like my disability was isolating me from the only queer spaces I had access to.

Fashion

My fashion and gender presentation are another thing my disability and sexuality have both impacted in interesting ways. As someone who has cerebral palsy, it is very difficult to wear dresses because the straps fall off of my shoulder due to my posture impairments. Bras are also difficult to put on and wear for this same reason. I cannot wear heels or flats because of how much they hurt the already tight muscles in my legs. This forces me to wear formal lace up shoes and suit jackets and blazers when I need to dress professionally. When I am going out, I wear button up shirts and pants instead of dresses. It is also hard for me to put on makeup or to shave by myself – two more feminine traits.

Combined with my queer identity, these fashion choices often cause me to be labeled as “butch,” or a more masculine presenting woman (versus “lipstick,” which is a more
feminine presenting woman). Within the lesbian dating community, people oftentimes have preferences over whether or not they prefer to date butches or lipsticks. These gender labels have a surprising impact on who pays attention to you and how other queer women perceive you.

Many queer women feel pressure (especially when they first come out) to align with one of these labels. When I came out, I felt like I should cut my hair and present even more masculine to fit this butch stereotype. I feel like the limitations of my disability automatically categorize me into certain gender roles within the queer community.

Coming Out / Disclosing

My particular type of cerebral palsy is not visible to a stranger. This means that both my disability and my queer sexuality involve some process of me coming out. I choose when and how people know about my disability and sexuality. Though they both often meet with very different reactions. Interestingly enough, when I was a child and teenager, I feared coming out as a lesbian way more than I did coming out as someone with a disability. But now as an adult, those roles have reversed, and I am much more anxious about coming out as someone with a disability.

Pride and Acceptance

Society teaches us to hate both our queer sexualities and our disabilities because they are not seen as what is “normal” for bodies and minds. Life is harder with either of these identities simply because they are often marginalized and discriminated against. But both identities are an innate part of you – within your body and within your mind and heart. For both of them, you eventually learn to accept yourself as someone with a disability and as someone who is queer. You learn to advocate for yourself, and over time you learn how to love yourself. And as you become more involved within your community, you learn how to have pride in yourself.

Both of these identities give me strength and courage. Both of these identities caused me to face bullying, and therefore allowed me to grow resilience. Both of these identities helped me become extremely empathetic. Both of these identities forced me to redefine what support and love means. Both of these identities have instilled a passion for equity and social justice into my life. Both of these identities are aspects of myself I would not give up, and have pushed me to become a better version of myself. And both of these identities inevitably make me who I am.

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I Didn't 'Settle' for a Husband With a Disability

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When I tell people my husband is disabled, I usually get a quick, emotional response. I get sympathy. I get pity. I get judgment. I get people who think, poor woman, she has such a burden, to care for her husband.  I get people who think, wow, she must be a saint for selflessly choosing a disabled person as her spouse.  I get my mother, who didn’t want me marrying someone who “couldn’t be strong for me,” who may not be able to be a reliable provider. I get people who wonder, why would she choose to be weighed down by someone who is sick?

There are a lot of problems with these responses. One is that when people hear “disability,” they seem to assume someone who is unable to care for himself and can give little to a relationship. That is a very narrow definition of disability, and in this case it is wrong. Along with this comes the idea that I am the caregiver for my husband, which is also incorrect.

My biggest issue, though, is the idea that I “settled” for someone with a disability. They assume that my husband is less than other people due to his disability. This is an offensive view. And it is completely wrong.

I never “settled” for my husband. My husband is brilliant, funny, honest, loyal, thoughtful, creative, and passionate. He has an endless supply of knowledge and he is becoming a very good cook. He is a great listener. He recently got his teaching license and is naturally gifted as a teacher. He also has numerous chronic physical conditions. This is just part of him. I see him for the person he is. I love him. And loving him doesn’t mean I love part of him and ignore or forgive the rest. No, I simply love him.

I do worry about my husband. I worry about how many years we will have together. I know that realistically I will likely live longer than he does. But I try to stay in the moment and enjoy the time we have.

I do see his weaknesses, but beyond his weaknesses I see such strength.  I see the child who survived a series of life-threatening surgeries growing up, to remove lymphangioma infections related to his KTS (Klippel Trenaunay syndrome). I see the young man whose spine, bent due to severe scoliosis, was nearly crushing his organs, and had still more surgeries while in high school. I see the adult who has survived two episodes of respiratory failure, along with managing a severe respiratory problem that came mysteriously and has no name. I see a man who battles chronic pain and fatigue.

So many everyday things are hard for him. Yet he fights through the pain, the fatigue, and the respiratory condition. He teaches full-time, experiments with new recipes in the kitchen, plays in a pinball league, goes out with friends, and spends time in nature. He does so many things. I see someone who is extremely strong and resilient.

My husband is one of those amazing people who seems to be content in nearly any circumstance. He is good at riding the waves of life and seeing humor in difficult situations. He battles so many obstacles every day. Still he finds joy.

No, I didn’t settle for a husband with a disability. I was blessed with an amazing man who is more than I could have ever expected. He is so good to me. I have chronic mental illnesses. I know I’m not always easy to love. But my husband shows his love to me every day. And I know that a man who has survived all the surgeries, infections, respiratory failures, hospital stays, and the bullying and abuse of a world that mocks people with disabilities… I know this man is more than able to handle whatever the world might throw at us.

I didn’t settle. I found a man stronger than anyone I have ever met. Every night I lie in bed and trace the scars on his back, amazed that he has survived so much, and grateful that he’s mine.

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