Posted in Advocacy, Autistic Identity, Neurodiversity

Difference or Disability?

When you talk to people in the Neurodiversity movement, one thing may stand out: Autistics may tend to focus on what we do well rather than focus on things we do not do well.  This makes one wonder whether Autism, ADHD, Dyslexia, Dysgraphia, or other brain-based differences are actual disabilities.  So, let’s talk about that.

Autism is Misunderstood, So Being Open and Honest Can be Misconstrued

First, it’s worth noting that there’s a difference between “in house” and “out of house” conversations.  In Catholic circles, we like to use the experience of various popes being quoted out of context.  I remember one example of a pope mentioning that someone using a condom because he has AIDS shows that he is taking the first step in understanding how to live for others, or something to that effect.  The media version said that the Pope said condoms are okay in Africa.  The problem with the Pope’s statement was not that it was inaccurate theologically, but that it was confusing for non-Catholics (and Catholics) who turned it into a sound byte that actually didn’t take into account the fullness of the message.

So, some of us try to avoid the problem you get with mixing in-house and out-of-house conversations.  In other words, Neurodiversity experts primarily focus on the good because we know the instant we say something is a struggle for us, there are tons of people waiting to agree with us and use that as evidence that Autism must be eradicated when we did not, in any way, mean that.  In-house, we know, we’re talking about how to make life better for us, not getting rid of us.  It’s a complicated struggle.

So, yes, we talk about differences as positives.  But when the media is filled with “bad Autistic” stories, consider it as a form of self-defense.

Take the case of Adam Lanza, the Autistic who was responsible for the Sandy Hook shootings.  He was Autistic, yes, but when plenty of neurotypicals have been involved in school shootings, therefore, it doesn’t seem to make sense to call out his Autism as a why.  Subsequent reports point out that he was also likely Schizophrenic and THAT, not Lanza’s Autism, likely was the contributing factor to the shootings.  They could easily have said that white kids kill people, or brown-haired kids are killers, but instead many media reports focused on Autism, which has no evidence of linking up to mass murder.

But we don’t understand Autism all that well, and lack of understanding leads to fear which leads to horror-filled stories.

Sometimes a single anecdote about an Austistic behaving badly is enough to send the Media on a rampage, as when Malcolm Gladwell decided that Autistics are subject to “threshholds of violence” but he completely ignored the fact (using his one case study as an example) that, as blogger Shannon Des Roches Rosa points out, that Autistics are FAR more likely to suffer violence from others than they are to inflict violence.  Rosa points out other examples of media disservice here.

Also some “Autism Moms™” run successful blogs talking about their children and their struggles in full view of the world. Some have gone so far as to describe their experiences in painful detail, using their children as props in their pity party blogs where readers are supposed to be horrified and demand that Autism be stopped.  For more on the “Autism Mom™” experience, visit the Bullshit Fairy, an Autism Activist here.

Understanding the Social Model of Disability: Why Autism Advocates Support Neurodiversity

It’s worth noting that there are many ways to view disability.  The first, the most common, is called the Medical Model.

The Medical Model of Disability goes something like this: the human body has a perfect, ideal form.  Disability means that somehow the human’s body diverges from “normal” and we should do everything we can to turn that abnormal body into a normal body.

This is the model used by doctors and most teachers.

Doctors focus on, say, blindness and what makes one blind and how can one be made to see.  Special education teachers focus on how to “erase” blindness in the classroom.  If you ask either of these groups to describe what Autism is, they will speak in terms of deficits.  What someone with this condition fails to do, and not what this person can do.  They assume there is a model of perfection that somehow we can live up to.

Deaf Activists in particular worked hard to get people to understand a different perspective.

Imagine you can’t hear.  You don’t know that you can’t hear since you largely hang out with people who also don’t hear and/or people who can speak to you using American Sign Language or some form of gesturing that’ll do if that person doesn’t speak Sign.  In your world, gesture, not speech, is normal.

Are you then disabled?

According to the Medical Model you are because you cannot hear.  But there’s really no impact in your daily life until and unless someone demands that you learn to read lips or learn to speak.  So, is not being able to hear really a problem?

Let’s take another example.  A person is in a wheelchair.  He or she has no problem moving around.  This person arrives at a building and can’t find the ramp or elevator, but there are stairs everywhere.

Who “disabled” the person in the wheelchair?  God, the Creator?  Or was it human society that caused the disability when no one thought to make a ramp or elevator easy to find?

[Image: a reddish-white brick wall] image from Pixabay

Neurodiversity is a branch off the Social Model of Disability, then, where we find that our brain-based differences are merely differences, but that Disability is a social construct, and we are not Disabled people until and unless society creates barriers.  Therefore, Disability is outside of us.

But let’s keep things “real,” so to speak.

Dealing the Hand We’ve Been Dealt: Living in a Society Designed by and for Neurotypicals

So while Neurodiversity advocates try to keep things positive, we do have to live in the real world.  This world was not created for us.  As such, we’ll need some help to get by.

This is why we have to advocate for things like assistive technology.  Some of us prefer to speak with Augmentative and Assistive Communication (AAC), a name for many technologies that speak for us.  These can include texting on phones or IM/e-mail vs. a telephone call all the way up to the kind of text-to-speech computer Stephen Hawking has.  This stuff can be expensive.

AAC is not a frill because it enables us to speak (or to speak less stressfully.  You can explore here a way AAC can be used by those of us who stress too much in telephone and in-person conversations).

We also need things like flexible work schedules and (often) work at home arrangements.  If we must go to the office, we need offices with windows and minimal fluorescent lighting.  Many of us need to work in non-crowded areas.  Since we have so many needs, many of us start our own businesses, so we could use special small business loans to help us to get started.

The only real solution offered by society, sadly, is SSI Funds (and even those can be hard to get).  And many of the technologies that exist are only available to schoolchildren at a reduced cost.

Until flexible work schedules and work-from-home arrangements are more typical and AAC becomes less expensive, we’ll need some help.

BUT…we don’t need help because we’re “broken.”  Society is simply not built for us…yet.  And until it is, we’ll need some help.

We’re not Disabled until someone disables us, but we recognize that, for right now, a lot of people don’t see how easy it can be for us to fully participate in human society.  But we’ll get there, thanks to the hard work of the Deaf community in particular, who paved the way for Autism advocates to see that being Autistic is a culture, not a disability.

We just need the rest of the world to catch up!

 

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