Dear Non-disabled People,
We have a lot to talk about, and I hope you will listen. I was amongst your ranks for the first two years of my life, although I don’t really remember that time. As such, my entire remembered life I have known that I was a person with a disability, so I am quite familiar with the way society treats disabled people. I grew up with the understanding that I might end up in a wheelchair. I was also told by doctors that I might even end up dying at a young age. It didn’t help that people like Jerry Lewis were saying that people like me, with neuromuscular disabilities, didn’t survive their childhood.
Given the fact that as an adult, you have probably seen or heard of charity telethons, you have probably also heard the host of such telethons discussing horror scenarios about the individuals you could be, “helping with your generous donation.” These are the same kinds of scenarios many of us with disabilities grew up hearing about in relation to the future of our own lives. You’ve probably also seen at least one film that features a non-disabled person pretending they understood disability, so they became a cripacature, and relied on harmful stereotypes, which does nothing but hurt how disability is viewed in our society. You probably can even name some of the films that have been awarded because the non-disabled world believes their performances are inspiring, heartfelt, and realistic, all while ignoring the cries of indignation from the community such performances have misrepresented.
The way we talk about disability, the way we look at disability, and the way we think about disability in this society is highly problematic. All of these inaccuracies seek to do is harm the disability community, and make all of you who are not disabled, afraid to join our ranks.
The truth is, you shouldn’t be afraid of becoming disabled. The chances of you becoming disabled or having a loved one become disabled, at some point in your life, is quite high. I’ve heard many of you saying things like, you’d rather be dead than disabled, you couldn’t handle my life, and you don’t know how I, or my other disabled friends, do it. You shouldn’t be afraid of having a disability, because being a disabled person is probably one of the most natural things to happen to us as human beings. Disabled people have been around, since the beginning of time. We are the world’s largest minority, with around 58 million Americans, and over 1 billion people worldwide. That’s around 20% of the world’s population.
I say you shouldn’t be afraid of having a disability because, for many of us, our disabilities aren’t that scary. While I have lived with my disability for my entire life, I have only lived as a wheelchair user for a little over half my life. For me, using a wheelchair all the time was such a freeing experience. I consider my wheelchair an instrument of freedom. I had struggled for so long to keep up with my peers. I had been left behind so many times. My family would not let me go certain places with them, because it was just easier to leave me home, even when I begged and pleaded to go. With my wheelchair, I was given back my freedom to explore the world. I did not have to be left behind anymore. It opened up a whole new world to me. At the same time, in many cases I was still left behind, because nobody wanted to accommodate the guy in the wheelchair. I couldn’t go certain places. I couldn’t visit a lot of my friends at home. Many people just didn’t bother inviting me places, because my wheelchair seemed like such a hassle to them. I was capable of going places and participating, but nobody wanted to bother.
You shouldn’t be afraid of having a disability. You should be terrified of living in a world that is not willing to accommodate someone because of something that is out of their control. You should be afraid of living in a world that is not willing to accommodate someone with a disability. You should not want to live in a world where disabled people lack access to housing, jobs, education, marriage, healthcare services, and full inclusion in society. You should be angry that you live in a world that would rather perpetuate stereotypes, by not including disabled people in any discussion about disability.
You should be angry that cities like New York only have 103 of 422 subway stations that are partially accessible to disabled people. You should be horrified that the rate of unemployment for the disability community is 12.5%. By comparison, the rate of unemployment for non-disabled people is 5.9%. You should be furious that this is even worse in Hollywood, where over 1000 people are registered members of SAG, and they work, on average, four days per year. You should be angry that in 2015, only 1% of television characters had disabilities, and none of the wheelchair users on television currently actually have physical disabilities. You should be angry that the Academy isn’t even including disability in their initiatives for inclusion in Hollywood, because disabled actors don’t matter.
Likewise, you should be furious that none of the political candidates have talked openly about their plans to make things better for the disability community. You should be really annoyed that both Bernie Sanders and Hillary Clinton have only mentioned disability in passing, and not more than during the times when they are mentioning other marginalized groups. You should be angry that both of them had the opportunity to bring up disability, and either didn’t or only mentioned a small section of disabled people, ignoring the rest of us. We are the invisible minority, even though were the only minority any of you can join at any point in your lives. You should be livid that most people don’t care to learn about the disability community, until it impacts them personally. By then it is too late, and not many people will listen. By then these people will face the same ill treatment and same rude stares so many of us receive on a daily basis.
You should be angry that many of us can’t get access to medication. For many of us in chronic pain, our lives would be so much better with the right medication, which for many of us is medical marijuana. We have seen friends in states where it is legal find great relief from the most problematic symptoms of our disabilities, which makes living with these disabilities much easier. We have seen them help with seizures, migraine headaches, pain, anxiety, nausea, and so many other things. Yet so many people in countries across the world can’t get access to this medication. This isn’t the only medication, or other healthcare service that has been denied to the disability community either.
You should be furious that visibly disabled people cannot often go outside without being stared at, made fun of, spoken about like we are not even there, infantilized, mocked, ignored, prayed over, given money like we are beggars, stepped on, walked into, and even spit on. You would be amazed how differently I’ve been treated since I started using a wheelchair full-time. People congratulate you for leaving your house, they assume you have no life. I couldn’t even go to the bus stop when I was in college without some stranger pitying me, praying over me against my consent, and giving me money even as I protested I didn’t need it. None of them believed I was in college, and all of them treated me like I was a child, not an educated human being.
You should be horrified that someone like me, deemed severely physically disabled, has an easier time getting access to kill myself through assisted suicide, than to the things I need to live a productive, fulfilling, independent life. The things I need include access to a working wheelchair, access to physical therapy regularly, access to a lift to get me out of bed, a wheelchair accessible living space, and access to the right pain medication. It is apparently more fiscally responsible to kill me, than to help me live.
You should be horrified at the stigma most disabled people experience. You should be especially horrified at the special level of stigma that people with invisible disabilities experience. Most actors in Hollywood have to hide their disabilities. A lot of them have invisible disabilities, and nobody talks about them, until they are secure in their career, for fear they will be unable to find work. Stigma goes well beyond Hollywood. Invisibly disabled people even face discrimination from the larger disability community, and are often accused of faking being disabled or are told they are lying about needing accommodations. You should be very disappointed at the level of bullying, which along with stigma has caused many disabled people to try to kill themselves, myself included.
You should be afraid to live in a world that does not include everyone, and you should do everything in your power to fight against living in such a world. That’s the reality of our world today, and we need your help to change this.
Will you help?
Signed: A disabled guy who is proud of who he is, but frustrated and horrified at the way he, and others like him, have been treated most of his life.
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Excellent post, but there is one small error. On NCIS:New Orleans there is a character in a wheelchair, and the actor playing him Daryl Mitchell, suffered a spinal cord injury in 2001. He does indeed have a physical disability, that requires the use of a wheelchair albeit one acquired later in life. http://www.imdb.com/name/nm0593258/bio?ref_=nm_ov_bio_sm
And I wish there were more actors like him on the air.
Thank you for the correction. For some reason I forgot Daryl Mitchell was on NCIS: New Orleans. I do not think there should be any less consideration for someone who acquires a disability later in life. They are still a part of the family, if they want to be!
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I like to thing that it’s easy to forget about it because the fact that the character is in a wheelchair is not something that defines him. He does what he does and he happens to be in a wheelchair. Because the show makes it a non-issue you almost forget about the chair.
Thank you for putting all of this into words. You’ve captured what I’ve been thinking about for a long time. It particularly stood out to me when I was watching Teen Mom 2 (I know, I know, I have terrible taste in television). It’s been hard to see the way Leah and Cory respond to their daughter’s diagnosis of muscular dystrophy. It’s even harder to know that the way they think about it is common and normal.
They speak about getting her a wheelchair as “giving up on her.” They’re afraid she’ll “get lazy” and “lose her progress.” To say it’s lazy for her to be able to get around as easily as her sister disgusts me!
Why should she have to struggle to be mobile while everyone else in the family doesn’t? That’s not lazy, that’s inequality.
Why are people obsessed with walking? Why is that a measure of success in life? Why is it seen as a tragedy if people are mobile in other ways?
Get her the f-ing wheelchair and then fight like hell to get the world up to an accessible standard. Wheelchairs can be and should be freedom. The only thing that needs to change is making places accessible to them.
I don’t know what to do to make that world happen but essays like yours will hopefully make an impact. I’ve shared it everywhere I can think of!
As a disabled, wheelchair user, I found this post to be true. Living in still developing country means that I have no access to public transport or any sort of public funding, thus all my life, my family has sacrificed everything for me. Perhaps, this could be something American Disability groups could look into. According to me, they have it far better than we do here.
Hello! I like this article and agree with all, what was told here. I am a wheelchair user from Russia. And we have same problems.
Oh, this is beautiful, i’m a writer on disabled issues (have CFS, Aspergers, arthritis and a still-mending broken ankle), and this has to be far and away the most eloquent piece i’ve read on disability, ever. Wonderful, wonderful, wonderful.
Thanks so much Penni! I truly appreciate your words. Take care!!
I feel the same way too. I know that my family had tons of sacrifices for me to reach this far and I thank them everyday for it.
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Wonderful post. All of the information you provided definitely helps to understand the best way to show support, tolerance, and understanding. We should all strive to create unity and this post definitely supports that. Thanks so much for sharing.
Awesome and very informative post, we do all need to make a point to create more unity! Also loved your mention of medical Marijuana being used to help those have have any sort of disability, it’s wonderful! Thanks for sharing.
Thank you for your essay. I’m an indivisible disabled persons on. Most people think i’m fine or can’t see the problem but my joints and unsteady gait disagrees. Some days I have episodes where i’m sure my body is about to collapse and fail and yet everyday: I have the same realistic worries about money, food accessibility,
Oh I just wanted to point out that SAG has over 100,000 members, making your ratio even more disparaging. Hollywood needs to be more inclusive of our realities.
Your awesome! I love your post I know it’s older but it really helped me tonight. I’m disabled some of it I was born with some of it not, I use a wheelchair now full time I won’t go into all the reasons why it’s rather odd failing leg and heart the biggest reasons. But I recently quit going places in my chair tried crutches due to lack of accommodation got injured and that lead to me just giving up after making a few phone calls about lack of accommodation to some places. I’m not happy at all that you struggle and others do what helped me tonight was seeing your passion. Knowing that you and other people like you are out there and fighting to change things and expressing what’s going on not just hiding like I have for the last couple of weeks. My husband is performing at a concert tomorrow and I’m not going because I know there won’t be accommodations for my chair at the university and don’t want the fuss. But your post did inspire me to stop doing that as often because we need to all stand together. I also understand the unseen disability my spelling and grammar issues are due to a pathway problem in my brain so sorry if there rather bad but I just wanted to thank you, my phone has no program to check for formatting. Thanks
awesome article. thanks for shedding more light on this!