Homedevelopmental disabilityWhy isn’t the disability community more unified?

Although individual disabilities make up a small part of the population, when all disabilities are combined, we make up a large portion. Why, then, are we still virtually invisible in the larger world?

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Are You Disabled Enough?
Because all types of disability come on spectrums, if someone’s not disabled “enough”, their needs are often discounted.

For example, my accommodations were taken away in high school, because I was able to get my grades high enough with said accommodations. Somehow, decision makers though that because I could score well on tests in a quiet environment, with extra time, I’d be able to do just as well with the rest of the kids, under the same time constraints.

Bear in mind, these accommodations cost nothing. Usually, I sat in the hallway for in-class tests or quizzes and returned when I finished. Predictably enough, my grades dropped, and with them went my mental health. I graduated high school with fear and hopelessness, not with senses of accomplishment or excitement.

I was on the honor roll and earned a Regents Diploma, but all I could think of was the unknown and the crushing reality of seeing my hard work spiraling down the drain. I did accomplish a lot, but I couldn’t see it.

I still needed those accommodations, but obviously those in charge thought my IEP was no longer necessary because I was no longer disabled enough to need it.

I’ve heard similar stories from other highly compensated dyslexics. I’ve also heard the same sort of thing coming from high functioning autistic people. Since they don’t fit the narrow idea of how someone on the spectrum should be, they were no longer autistic enough to get the accommodations they need.

It’s a surprisingly common phenomenon in most of the groups I’ve observed, including many of the physical disability and chronic illness communities.

Visible vs Invisible
There’s also a gulf between those with visible disabilities and those with invisible varieties. People do treat us differently based on appearance. They’ll treat someone in a wheelchair differently from someone who can walk around, for example.

Somehow, that translates into the idea of “real” versus “made up”. If you can’t see some sort of physical accommodation, the person doesn’t need any accommodations.

Except, that’s not true. Yesterday, I watched a great documentary about the impact shared space road design in Great Britain effected their blind and partially sighted population. (You can view it right below this paragraph.)

The city planners didn’t consider their unique needs at all when designing the new street design. They talked to people with physical disabilities, but didn’t think of those with sensory disabilities. That resulted in an impossible to use space for otherwise independent people.

It took a huge amount of work from the blind/partially sighted community, but changes are being made.

For the record, shared space road designs are a bad idea for ANY busy thoroughfare. I’d be terrified to cross, and my eyesight is pretty good.

Us vs Them
There’s a thing both in and out of the disability community called “suffering olympics”. It’s when one party tries to prove how much worse off they are than the other. This harmful attitude does little more than frustrate everyone involved and invalidate all experiences.

I can’t stand it, and if I catch it starting, I either try to steer the conversation in a different direction or end the interaction.

There’s also the tendency to pit groups against each other, usually in terms of funding. “If you give X-amount of money to kids with learning disabilities, all of the ‘normal’ kids will suffer! You can’t make one group more important than the other!”

There are ways of honoring each other’s challenges while still acknowleging our own. We can give accommodation to those who need it without depriving the rest of the population.

For instance, many accommodations benefit everyone. SPD accommodations autistic folks rely on are beneficial to dyslexic and neurotypical people.

Auditory integration disorder associated with autism is also common with dyslexia. Neurotypical people have sensory needs to keep themselves relaxed and functional. They may not be as extreme as those with SPD, but they’re still there.

Quiet spaces help prevent meltdowns, but they can also prevent things like migraines.

Many accommodations for blind people are hugely helpful for people with dyslexia and other reading disorders. The last time I was at the Mall of America Transit Station, I noticed this:

That particular station has schedules posted everywhere, and overhead signs scrolling real-time bus arrivals. The way the text is printed can be hard to read, especially with that glaring white background. Fortunately, they also have these buttons at the stops. When they’re pressed, an automated female voice will state the time for the next bus.

This is extremely helpful not only for blind people and dyslexics, but also people who may need to keep their attention on small children or must keep their attention elsewhere for whatever reason.

It’s worth noting that there’s also a phone number anyone can call for schedules and live-time arrivals. Their mobile web page has helped me make certain routes with their map and GPS functions. You have no idea how much that helps with working memory lapses and directional problems.

It doesn’t need to be us versus them. We need to get away from that antagonistic point of view, and start concentrating on how to use our commonalities for solutions.

No One-Size-Fits-All Solution
Part of our invisibility has to do with that diversity of disability. There’s no one-size-fits-all solution.

The unique advantage to disability accommodations, however, is that those same measures often help everyone.

Speech recognition software now comes standard with many mobile phones and touch screen technology is everywhere. Ramps help people who use wheelchairs, but they help anyone with strollers, rolling luggage or problems with their legs, like knee injuries, arthritis and some types of chronic pain.

Multisensory learning styles that help those of us with specific learning disabilities help neurotypical kids, too. An inclusive society benefits everyone.

These are only a few of the challenges we face in the fight for true understanding, but there is still some progress being made. While there are organizations dedicated to specific disabilities, there are also online spaces open to discussion on all kinds of disability.

Two twitter chats that I try to attend regularly, #AXSChat and #DDChat, embrace all kinds of neurodiversity.* The convention I go to every year offers more accommodation for many types of disability than most jobs I’ve worked at. Theaters like AMC have started hosting Sensory Friendly Films, which accommodate not just kids with autism, but all kids with SPD.

That said, there’s still a lot of work to do. As we grow, so should our advocacy and activism. Examining ingrained toxic attitudes is painful, as is facing anger from those who may feel helpless, but it’s something that should be done.

Let’s stop working against each other and start working with each other.

*The big challenge with these two are that they’re UK based, so they happen in the middle of the day for people in the US. I’m thinking of starting a similar chat one evening a week for those who can’t be on twitter during the day.

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