by Amy Potter
I’m tired of being invisible. I’m not talking about my invisible disability – I am happy with that and don’t want to part with it. No, what I’m tired of is Disability itself being invisible.
Even when I am working among allies, all of whom I know are dedicated to Equity, Diversity and Inclusion, I still go invisible. They will list the minority groups and forget disability. They will talk about topics to address, and none of the topics relate to disability. It isn’t deliberate, which is an issue in and of itself. These are people with the best of intentions, who genuinely care about these issues, and even they can’t remember to include disability as an important issue.
The only people who see disability clearly are those who are disabled. While disability is the largest minority group, there still are not enough of us to bring about change for the disability community on our own. How do you win a war that people are unaware is being fought? The battles against ableism and for disability rights can never make progress if we can’t make people aware that the battle is occurring. We need allies outside the disability community, but no one will join a cause they don’t know exists. Our invisibility is a very real problem standing in the way of progress and success.
I think there are several reasons for this seeming invisibility of the disability community. One contributing factor is that we are such a diverse minority group, with so many people with completely different disabilities and different, sometimes conflicting, needs. This makes it hard for the group to come together as one to make changes and get attention.
Another reason is fear, pure and simple. Disability is the only minority group you can join without originally being in it. People know that many forms of disability can suddenly come upon them – disease or accidents can occur and change the course of a person’s life, permanently making them a member of the disability community. Naturally, this is something people fear. They don’t want to think about it, so they push the thought away. They push disability and disabled people out of their consciousness, so they can be more comfortable in their own life.
The last reason I see, is that disability is viewed generally as a negative thing. People are proud to be LGBTQIA+ or be a person of color. Disability is a little more complex. There are those like me, who are proud of our identity as a disabled person and who wouldn’t change it. But there are also just as many people who do not feel this way. There are legitimate reasons for this. There are some disabilities that make life unbearably hard, that cause pain and suffering and that will even steal the life of the disabled person. It is hard to be proud or happy about such disabilities. We are not united in this, and so, without a strong voice behind it, disability remains to be seen in a negative light.
We are dealing with a complex problem; thus, a solution will be in no way simple. I can’t pretend to have answers, but from what I can see there are two things needed to make progress. The first is the work needed from those outside the disability community – the allies, friends, and family of the disabled. The second is the work the disability community itself needs to do. Without work from both sides, the problem of disability invisibility will not be overcome.
The work our allies from outside the disability community need to do is diverse and vast. The first thing is to stop speaking for us. Stop writing books about being the parent/doctor/therapist of someone with a disability. Stop leading disability groups. Step back and allow those in the disability community to speak and do for ourselves. For far too long the picture of different disabilities, such as Autism, has been presented through the words of doctors and parents. Sadly, both of those groups focus far too much on negative things and skew people’s concept of disability. Doctors want to cure things; they see us as problems to be solved. I can’t tell you how tired I am of seeing some able-bodied neurotypical person claiming to be an expert on one disability or another. The only experts about a disability are those with the disability.
Parents are more well-meaning than doctors, but they still can do damage. With the best of intentions, parents share the pain and suffering they went through with their disabled child, thinking it will help some other parent to deal with the situation. If a parent wants to write a book about their disabled child, they need to have it co-written by said child, otherwise everything that parent says is questionable. They may think they helped, but unless the child confirms the truth of their story, there is every chance the parent did damage unknowingly to their child and is now telling someone else to do the same. It’s time for people to come to terms with the fact that good intentions are not sufficient. What matters is impact. No exceptions.
We need the books, movies, social media – all information about disability – to be coming from own voice, disabled people. The information parents of children with disability would benefit from hearing would come from the voices of successful people with that same disability, telling them how they got to that point, the trials and tribulations they faced, and how they overcame it all to get to where they are. This is what will inspire parents, teach them, and give them hope.
The next thing the allies need to do, is embrace accessibility. Everyone can play a role in championing accessibility in the world. Accessibility, or making a world that is designed to include and accommodate those with disabilities, is a big project. It isn’t just in making sure buildings are accessible, although universal design is one important part. There is also digital accessibility; making the digital world more convenient and accessible to the disability community. There is voting accessibility; ensuring that voting is accessible to all. Voting itself is an area where allies can help, voting to support accessibility advances and funding. There is so much that goes into accessibility, as it touches all aspects of life, but simply making sure your website is written in dyslexic friendly font or that your building has a ramp is a good start.
The internal work that is needed from the disability community is just as vast. The most obvious thing is to come together. The saying “United we stand, divided we fall” applies very well here. We will never reach our goals if we cannot come together as one community. It is not effective to be just the Autistic community fighting for Autistic rights or the Deaf community fighting for Deaf rights. We need the entire disability community to rise up and stand together for each of these battles, until all members of the disability community have the rights, resources and support that they need.
The next thing, we, members of the disability community, need to do is be more vocal. About our successes, our struggles and our normalcy. All too often we suffer in silence. Many of the members of our community are used to pain, so we’ve stopped complaining about things that cause more of it. Either because we’ve been told people are tired of us whining or just because we have come to believe being stoic and tough is the right way to deal, or, sadly, in some cases, because we’ve given up hope that it will make a difference. Sometimes it’s just that we don’t have the energy or spoons to voice our issues on top of dealing with what life has served up. I realize that saying we need to do more, when we often simply don’t have the energy or ability to take on more, isn’t fair. It may not even be possible. Still, we need to try. In the moments we can do it, when we can spare that energy and time, we need to try. The moments might be few, but if all of us took advantage of those rare moments we would have far more voices out there being heard. Doing a little is completely fine. Many people, each doing a little, will have a big impact.
It isn’t just our struggles that we need to share. We also need to share our victories. The stories of our victories are so important. I was a rarity, a girl who was diagnosed with Autism young, in my early teens. There were almost no success stories about Autistic women accomplishing amazing things or even just living normal lives. The view on my horizon was bleak. I had only the words of doctors telling me what I wouldn’t/couldn’t hope to do or achieve. I would have been so encouraged to have read or watched anything that would give me hope for my future. Sharing our victories matter. It matters to the kids growing up with the same disabilities. It matters to the parents of children with disabilities who worry about their children’s future. Allowing ourselves to stay invisible has real consequences for future generations. I hate looking back, knowing I might have achieved more with my life if I had been led to believe I could. I imagine what I might have accomplished had I been given the resources I needed to help me succeed. I don’t want the kids today to have those same regrets. I want them to see that they can achieve amazing things and I want them to aim high.
Naturally there is more that both groups can do, but going on and on and making a long list is overwhelming. If we can make progress in these two areas it will be a strong start. When people are confronted with a massive list of things they are “supposed” to do, it overloads the brain, or at least it does mine. Then I’ll do nothing, because I can’t focus on where I should begin or what’s most important. I’d rather people take baby steps in the right direction towards making the disability community visible to the larger world, rather than focusing too much on the bigger picture of the hugeness of fighting for disability rights and the issues of ableism, and freezing in place.
Internal and external forces are pushing the disability community into the shadows, stealing our voices and making us invisible. We need to work together to take steps to combat this issue and shine a light on the disability community, bringing our issues into the spotlight. Until people see us, the disability community, and see our issues and our struggles, they won’t make the changes we need to thrive. We need allies, but invisible people can’t gain allies. To my eyes, gaining visibility is the next step towards progress and change for the disability community. We, the disability community, are an amazing group of people with so much potential and so much to offer the world. For us to stay invisible would be a loss for everyone.
Amy Potter is a proud Autistic writer, whose day job is working in a library. She writes extensively on the topics of Neurodiversity, Accessibility, Disability Rights, EDI (Equity, Diversity & Inclusion), and, naturally, the awesomeness of Autism. Amy is a rarity, a woman who was diagnosed with Autism in her early teens (back when Autism in girls was basically unknown), and ADHD when she was even younger. She lives happily with her cat and spends most of her time, when not writing, reading. Within the library system where she is employed, Amy is deeply committed to fostering Equity, Diversity and Inclusion. She dedicates herself to promoting events like Autism Acceptance Month and Disability Pride Month. She loves recommending books written by Autistic writers, as well as other “own voice” books. She has had articles published by the Washington Library Association journal; “Alki: The Washington Library Association Journal.” She is especially proud of her piece “Neurodiversity and Accessibility.”
