Is Autism a Disability or a Difference ? BY Judy Endow

382592_10150471255438318_535028317_8893053_968215148_n

“So many ideas in the larger autism community often become a debate. As an autistic this black-or-white, choose-your-side sort of thinking is very neurologically friendly to me. I like clear choices. But I also believe we are often unwittingly duped into believing we need to choose a side only because the idea is presented as a dichotomous choice.

“Is autism a disability or a difference?”is one of these questions posed as a dichotomous choice in the autism community. The way the question is posed gives the impression that there is one correct answer.

When Autism is a “Difference”

Many autistic adults would like if autism were recognized as a difference rather than a disability. Many in this group are the walking, talking autistics. We can go out in public by ourselves. Some of us are parents. We are your friends, neighbors and co-workers. We might seem to be a bit odd, but we can fit in enough to at least be allowed a place in the world at large.

Even so, being out and about in the community poses significant challenges. The sensory overload and neurological processing differences dictated by our brain along with ever present challenges with communication and conventional social understanding are such significant differences, even though we can accommodate for them, we are usually exhausted from doing so by the end of the day.

It seems to me that when we are able to be out and about in our communities unassisted by a hired person we are often expected to look and act like typical people regardless of the challenges imposed by the neurological difference of our autism. Because we appear to be like others, our difficulties and needs are thought to be our own personal problems. Even though we have an Autism Spectrum Disorder diagnosis that by definition means we have significant difficulties in many areas of life, others often look at us and ascribe negative intentionality and character flaws to us.

When Autism is a “Disability”

For some of us, the way our autism plays out in our body means we are faced with numerous obstacles to overcome every day of our lives. We may need communication devices, occupational therapy equipment and to employ personal care workers. For those of us whose autism presents challenges with these kinds of needs – we understand the disability aspect of our autism.

We often need a hired person to accompany us when we go out into the community or to support us so that we can communicate. In fact, we may require 24/7 support staff. And for some, our autism plays out in our body in such a way that people can see it as we approach! For us, people can see we need help. Rarely do others look at us and attribute our difficulties to laziness, lack of motivation, self-centeredness or any other negative character trait.

But because our autism is so visibly noticed along with the significant support we often need, people make other sorts of assumptions about us. Our needs are so obvious that people do not always consider that we also have strengths and abilities along with likes and dislikes. Often we are placed in menial jobs as adults (if we are even deemed capable of working) and our support staff is switched around as if people are interchangeable and relationships do not matter to us. We are not often seen as people who have preferences, desires, abilities, skills and talents as the time and energy of others are focused on the meeting deficits and needs imposed by our disability.

Negative Outcome of Choosing Disability OR Difference

As an autistic person when I am asked to choose one – either “disability” or “difference” – I feel like I am being asked, in essence, which part of me I would like to ignore. When I choose “disability” it means my talents, strengths, abilities and preferences are ignored. When I choose “difference” my very real difficulties and needs are not only ignored, but I am often blamed for what others consider my stubbornness in hanging on to negative “character flaws.”

Might We Incorporate Both Disability AND Difference?

What if we all chose both disability and difference? Would we then be totally ignored or totally supported? There it is again – another dichotomous choice posed as if it were a real choice!

In the meantime, please know when you ponder whether autism is a disability or difference this is a false choice sort of deal. It serves nobody well and has poor outcomes. And yet we somehow feel that we need to choose between disability or difference.

Why is that?”

Written by Judy Endow.

See more at: http://ollibean.com/2014/06/20/autism-disability-difference/#sthash.NMT4ZQZ4.dpuf

Related posts: http://seventhvoice.wordpress.com/2013/10/11/autism-different-not-less-the-importance-of-belief-3/

http://seventhvoice.wordpress.com/2013/12/04/adapting-peggy-mcintoshs-paper-on-unpacking-the-invisible-knapsack-of-privilege-to-accommodate-and-reveal-how-neuro-typicality-constructs-its-own-unspoken-system-of-privileg/

http://seventhvoice.wordpress.com/2013/11/22/women-and-autism-how-one-womans-letter-to-a-psychologist-finally-helped-her-receive-an-asd-diagnosis-after-years-of-personal-invalidation/

http://seventhvoice.wordpress.com/2013/11/10/autism-form-an-adults-perspective-its-a-horrible-feeling-of-vulnerability-and-helplessness-to-know-that-the-non-autistic-world-sees-you-as-seriously-impaired/

http://seventhvoice.wordpress.com/2013/11/09/rising-to-meet-the-challenges-of-understanding-ourselves-as-autistics-in-a-non-autistic-world/

Chalk Word Lines of Separation by Judy Endow

chalk_outline_by_madam_top_hat-

“Sneaky words, said with a smile,
While holding a piece of chalk,
To draw the dividing line,
Made by words,
Sounding alright on the surface,
But laden with,
Otherness.
Less Than
Different
Not US
And sometimes Not Quite Human

We are the people you call

  • Special
  • Low Functioning
  • High Functioning

You say we are in need of a

  • Peer Buddy
  • Peer Pal
  • Good Friend from Mrs. Jones Program

We are the

  • Inclusion Student
  • The community service hours other kids need

We sit

  • At the Peer Buddies lunch table
  • The Special Ed table in the Inclusion Room
  • On the Special Ed bench waiting for our short bus

During the school day you will find us in the

  • Inclusion Room (when it is our turn because they can only take one of us at a time)
  • Cognitively Delayed Room
  • Behavior Room
  • Emotionally Disturbed Room
  • EBD Room (Emotionally Behaviorally Disturbed)
  • Special Ed Room
  • Special Needs Room

We are so doggone “special” that after school we attend

  • Special Olympics
  • Special Arts
  • Special Night at the YMCA
  • Special Needs Social Group

Where every participant is just as special
And those who are not special are our helpers

 When we grow up we live in

  • Special Housing
  • Some of us in Section 8 rentals
  • Some in group homes
  • Some in county care facilities
  • Some of us are so special that there isn’t even a special enough place for us so we stay living with our parents.
  • Some of us are not quite special enough to get on a housing list and yet cannot maintain on our own so we stay living with our parents.

As adults too many of us spend our days

  • In Special Programs (if our county has them)
  • At ARC (if our town has an ARC)
  • At Sheltered Workshops (if one is available)
  • In Supported Employment (if we qualify)
  • Looking for a job (on the days we are able to)
  • On the couch in our parent’s home (because other options are not available)

Because we are so deficient
In ever so many ways
Whenever we do something ordinary
like zip up our jacket, ride a horse, or answer Jeopardy questions you describe us as

  • Awesome
  • An Inspiration

I don’t understand this. If my friends and I are such awesome inspirations to the rest of you

  • Why is it that we are in two distinct groups – US and THEM?
  • Why is it that your group always holds the chalk?
  • Why do you keep using your chalk to draw lines that divide us?
  • Why do you want me on the other side of your line – away from you?
  • And why do you think this is good?”

By Judy Endow

This is just an abstract from her amazing poem, “Chalk word lines of separation”, I encourage you to read it in its entirety on her blog site at http://www.judyendow.com/advocacy/chalk-word-lines-of-separation/

Asperger Syndrome and the need for Social Justice – Could Autism be benefiting our society?

can-stock-photo_csp16798247

A feature of Asperger’s syndrome that can be advantageous to society is a concern with social justice and discrimination against minority groups.

This can sometimes be strikingly developed in Asperger’s cases, often because of their characteristic impatience with conventional hypocrisy and publicly accepted double standards (not to mention the fact that they sometimes feel the victims of discrimination themselves).

Modern societies have canonized such concerns in law and public attitudes, and a number of famous campaigners for equal rights and social justice have been posthumously proposed as Asperger’s cases.

Autistics tend to be loners, who are poor at participating in group activities of the kind that exploit social justice and anti-discrimination sentiment for self-serving political and social advantage.

Modern authorities on autism have described autistics as “truth-tellers” and, thanks to their bottom-up, devil-in-the-detail style of cognition, are often the first to see that the emperor has no clothes or that the great idol has feet of clay.

Furthermore, they are also likely to be the ones to blurt out the truth, and draw attention to the inconvenient fact, irrespective of what others may think.

I do believe that autistic antagonism to lies and deception of all kinds is not only the most redeeming feature of the so-called disorder, but one which autism shares increasingly with modern societies—and very much to their benefit.” Original Article by Christopher Badcock http://www.psychologytoday.com/blog/the-imprinted-brain/201006/the-big-plus-the-outsider-society-truth-challenges-lies

I have often wondered whether or not the world would be a much better, fairer place, if it were being run by people who felt a burning need for social justice… aka…Aspies.

The above abstract is from a much larger article by Christopher Badcock which makes some strikingly good points regarding the ways in which the strengths of those with Asperger’s could be put to good use within our societies.

So what do you think?

Have your say on whether or not you think the world be a better, fairer place if it were being run by Aspies in the comment section below.

Different on the Inside by Susan Golubock part 2

Artwork by Loui Jover

Artwork by Loui Jover

Remember those awkward,

Social moments,

As an adolescent,

Or pre-adolescent,

When you were trying,

To fit in,

But didn’t really know,

What was in?

Or what was expected?

So you stood there,

In conspicuous silence,

Rehearsing everything ,

You wanted to say,

Waiting for the chance,

To speak,

Then blurted out,

Some untimely statement.

Or more,

Than you really intended,

To say?

Not knowing when,

Or how to stop?

Imagine having those moments,

Occur,

Regularly,

With family,

Friends,

And strangers alike.

Your best defense,

Is to memorize small talk,

Or keep your mouth shut,

And let others talk,

About themselves.

Meanwhile you struggle,

To filter out,

The background noise,

They so easily,

Seem to ignore,

Processing about 50%,

Of what they say.

Then there’s the feeling of panic,

When the dreaded question appears,

Requiring you to suddenly shift,

From processing to productive,

Without the time you need,

To do it.

It makes you wonder,

When it’s so difficult,

Why,

So many people,

Consider socializing,

To be,

So much,

Fun.

Different on the Inside by Susan Golubock

Different on the Inside. By Susan Golubock

Artwork by Tran Nguyen

Artwork by Tran Nguyen

“To look at us,

You and I appear very much the same.

Yet I have learned that we experience life,

And therefore view our experiences,

Very differently.

I have learned that I just don’t think like you,

No matter how hard I try,

And believe me I have.

My nervous system seems to be,

Configured differently.

I’ve learned to do,

What you do,

At least the mechanics of it,

But I don’t understand,

Why you do it.

I’ve memorized the words you use,

And can repeat them fluently.

Figuring out what you mean,

And why you say them,

Is the hard part.

I process words literally,

Concretely,

And naively,

Which often leaves me baffled,

And confused.

I thought that by pretending,

To BE you,

I would someday,

Understand you.

But I don’t.

Any more than you understand me.

There are times when I join in,

With you,

And truly enjoy,

Interacting with you,

But I rarely feel that I belong.

I can focus on you,

Or I can focus on me,

But understanding the complexity,

Of relationships,

Is very much beyond me.

There are times when I can connect,

With my feelings or yours,

But never both,

At the same time.

And some emotions not at all.

There are times when,

I really think,

I understand you,

Then you change,

And I don’t.

And even though,

I have stopped,

Trying,

To BE like you,

I haven’t stopped,

Trying,

To understand you.

It would mean a lot to me,

If you would try,

Just for a little while,

To understand,

What it must be like,

To be ME.”

This is an abstract from the poem “Different on the Inside” by Susan Golubock.

Stop Expecting Me To Apologize For Being Who I Am

Artwork by Jasmin Junger

Artwork by Jasmin Junger

“I am not “lazy” because I can’t function emotionally or mentally in the general work force.

I am not “weak” because I have a hard time processing emotions and am easily overwhelmed by the emotions of others.

“I am not a “recluse” because I prefer to stay at home where I feel most in control and safe.

I am not “anti-social” because I cannot handle large public gatherings and can only handle one or two friends at a time.”

I am not “stupid” because I cannot understand some math concepts and have a hard time with my handwriting and communicating verbally at times.

I am not what you want or need me to be

I am Autistic and I don’t have to apologize for that to anyone.”

These powerful words  by http://lennemi.wordpress.com represent  the way many with Autism feel about the overwhelming expectations placed on them by a society that refuses to accept them for who they are and instead replaces understanding with often cruel and ignorant  judgements.

lennemi’s words have been reproduced on this blog with the full permission of the author.

They are part of a brilliant post which I urge you to find here   http://lennemi.wordpress.com/2014/07/02/autistic-what-i-am-not/