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Voices: Bridget Allen

  • Posted on December 18, 2013 at 10:00 AM

As I delve further into the issue of disability employment, focusing somewhat on the possibilities for better employment for people with neurological differences, it’s important to recognize that there should be a choice. Bridget Allen brings us that voice.

First, I want to clarify that my focus is on disability employment because there is a problem I see that I want to fix:

But I do not work. I am autistic, and being the autistic I am means I am real-world, social-model-disabled. I do not work because I cannot. There are a dozen hypothetical ‘what if...’ or ‘should be...’ scenarios in which I could hold down a job, but that is not my reality.

There are very few reasons that I can imagine that work should be impossible for someone who wants to work. If you want to work, but you’re incarcerated for criminal activity… If you want to work, but you’re comatose… If you want to work, but you need to spend your time rehabilitating from an injury, illness, or addiction… If you want to draw a payment, but don’t actually want to work… If you want to work, but aren’t willing to abide by the ethical standards of your profession… These are a few reasons why work might be genuinely impossible.

In a society as diverse, as wealthy, as technology capable as ours, there shouldn’t be such a thing as “too disabled to work” for someone who wants to work. Accommodations and innovations are sufficiently possible to give people the opportunity to work to support themselves, regardless of their disabilities.

This idealized possibility of work shouldn’t mean someone’s self-worth or social-worth should be defined by the work that they do (or don’t do, as the case may be) as indicated by this passage:

My childhood was infused with a popular feminist theme. I was taught that a Real Woman is financially independent. She doesn’t need a man be it a husband or larger entity (The Man) to support her basic needs or the needs of her offspring. A Real Woman knows children are an accessory to a career, not something one builds a life around. I regularly heard the words ‘housewife’ and ‘brood mare’ used interchangeably. I am loathe to believe this is real feminism, because empowerment that exists on the denigration and neglect of other’s needs empowers no one.

It certainly shouldn’t be a choice between acknowledging one’s need for disability-related assistance and raising one’s children without interference from CPS as indicated in this passage:

I started to apply for disability once, but every worker I spoke to asked the same question: If you are too disabled to work, how can you be a fit mother? I was told, repeatedly and in no uncertain terms that if I submitted an SSI application, a Child Protective Services investigation would be in my future.

It should simply be a choice:

If I could choose, I likely would stay home, but I don’t really have that choice. I’m too disabled for gainful employment, and it would be a slap in the face to too many people I respect to fake that.

Voices: Susan Boyle

  • Posted on December 11, 2013 at 10:00 AM

“Celebrity” autism diagnoses aren’t terribly uncommon. Of course, in most “celebrity” diagnoses I’ve seen, it’s the child of a celebrity being diagnosed with autism and the celebrity using their fame to raise awareness and drive for a cure. It’s a relief, then, to see another voice take on the issue from an entirely different celebrity perspective.

Here are some quotes from an interview with Susan Boyle:

“It was the wrong diagnosis when I was a kid,” she says. “I was told I had brain damage. I always knew it was an unfair label. Now I have a clearer understanding of what’s wrong and I feel relieved and a bit more relaxed about myself.”

Unfortunately, this is a common experience for women with Asperger’s. For several reasons, it’s especially difficult to get an accurate diagnosis of autism when you’re a girl. What’s even more unfortunate is that this is still true. We’re making progress, but there’s still an assumption that the autism spectrum is primarily a “place” for boys.

“I am not strong on my own,” she admits. “When I have the support of people around me I am fine. I have a great team.”

There is an assumption that, because people on the autism spectrum have trouble with socialization, they have a lesser need for friends, family, love, fellowship, and all that goes with it. This statement is in direct challenge to that assumption and is consistent with the experience of many people on the spectrum.

“I think people will treat me better because they will have a much greater understanding of who I am and why I do the things I do.”

I would hope this is true, but considering the lingering prejudice against people with neurological differences, I fear it will not be.

Voices: Susan Senator

  • Posted on December 4, 2013 at 10:00 AM

Though her son, Nat, is older than any of mine, I can’t help but find something of a kindred spirit in the voice of Susan Senator. I’ve agreed with her and disagreed with her in times past, but I’m not going to dwell on the totality of the autism dialogues. Instead, I’m going to focus on two of the sentiments she shared in this piece.

First, there’s this passage, which highlights a problem we both see:

And nothing really changed for him until he was nearly 6, in a school that practiced a strict behavioral approach. Behaviorism was the only thing that could puncture that apparent indifference of his. I didn’t like this approach for that reason. It seemed almost mean-spirited, to force him to pay attention all the time to others’ trains of thought, to reward him like a puppy, with treats, to make him work every waking moment to correct himself. To learn that everything he did was wrong.

Even though my children are so much younger than her on (my oldest is not yet 15) this is still the dominant, prevailing attitude and approach to autism treatment.

Then, there’s the alternative she highlights, which I propose as a widely applicable solution:

Somewhere along the line I let it go. But when he reached his late teens, there was a stunning burst of growth. The sun’s rays shot out from behind those clouds and suddenly he wanted to be with people. No, he did not de-auticize. He just wanted friends.

It was plain old being ready. Time. And the nurturing acceptance of Special Olympics coaches. The message that you are perfect just as you are, now let’s play ball.

Children grow up, whether they are autistic or not. Acceptance nurtures that growth, whether the one who is accepted is autistic or not. Think back to your own childhood. Who made the most positive differences in your life? Did they treat you like a problem that needed to be fixed? Or did they treat you like a person who was worth helping? Does your child deserve any less?

Voices: Dr. Manny

  • Posted on November 27, 2013 at 10:00 AM

Dr. Manny threw his considerable support behind Chris Tuttle and the movement to employ people on the autism spectrum when he wrote a brief article raising awareness about Tuttle’s experience, the growing employment opportunities, and Dr. Manny’s expectations for society:

“No matter what, I will always stand up for the rights of people on the autism spectrum and try to spread awareness about this disorder. Fortunately, many industries today are starting to focus on creating employment initiatives for this population, which is such a wonderful enterprise. We want all people – regardless of disability – to have opportunities for independence and growth. But this can only be accomplished if we have a tolerant and understanding society.”

As much as I support and applaud this sentiment, as much as I empathize with Dr. Manny’s experiences as the parent of a child on the autism spectrum, and as much as I want to support all the good things Dr. Manny said and all the positive awareness he’s raised, I can’t help but get stuck on his opening sentence: “Today, I became aware of a story about a grocery store employee afflicted with Asperger’s syndrome, who was unnecessarily harassed by a female customer,” (emphasis added).

Contrast that brow-raising assertion with the original article, which stated:

“Tuttle-Virkler noted in her post that her brother was diagnosed with Asperger’s syndrome, a developmental disability characterized by difficulties in social exchanges and repetitive patterns or behaviors. Tuttle-Virkler said that the incident really upset her brother,” (emphasis added).

It’s hard to raise awareness about the abilities of people with disabilities while still using the language of disability-as-affliction.

Voices: Emily Willingham

  • Posted on November 20, 2013 at 10:00 AM

Emily Willingham wrote this heart-felt piece published by Forbes.

Usually, when I land on a Forbes page it’s because I’m researching a piece for a client. Forbes is a fount of respectable business information. But this time I landed on a piece decrying Autism Speaks. In Forbes. That’s gotta hurt!

Apparently Suzanne Wright penned a little missive that pissed Emily off and Forbes is quite the platform for a scathing response like this:

“It’s odd that Wright would argue so strongly for supports given that, according to the Autistic Self Advocacy Network [their statement on Autism Speaks is here], her own organization in 2010 devoted only 4% of its budget to “Family service” grants. And Autism Speaks’ track record on inclusion of the very people it claims to represent was limited, at best, and now has returned to nonexistent.”

I am trying to be more respectful of the wider community of voices and generally I do a pretty good job of it. But I can’t help but take pleasure in reading Emily’s Forbes-worthy critique of the “science” and untenable position of Autism Speaks.

A Vision for the Future

  • Posted on December 5, 2011 at 8:00 AM

Lines are drawn in the sand. A community of interested, active participants is divided and shattered into ineffectual bits and pieces. People who care, who are knowledgeable, who mean well, who are willing to work for change…people who should work together butt their heads against each other, wasting their energy on each other, arguing with CAPS, shouting across picket lines, reveling in the damage done to the other side. As these divisions are formed, it seems we are drawn to dichotomies. However much we know there are many sides, many points of view, and much room for both agreement and disagreement; we inevitably boil it all down to “us” or “them.” And those who wield the power go on their merry ways, sacrificing the welfare of the many for the profit of the few, with no concerted effort to thwart them.

The environment is discouragingly familiar. I find it sad and disappointing that I could be describing the autism community. You see, I left that environment years ago when I left the political blogosphere. I was tired of watching the citizens that make up this democracy turn on each other while those who held power exercised it with impunity. While there are legitimate debates between conservatives and liberals, and all the mid-points in-between, I couldn’t stand watching either side defend their dirty politicians as if their talking-points were motivated by anything other than political self-interest. (Full disclosure: I was party to such behavior early in my foray into politics; it was listening to other “sides” that helped me to see what was going on and it was my affinity for “the big picture” that made it clear that positive change wouldn’t come out of such dialogues.)

I didn’t expect that scene to be replayed in the autism community. I didn’t expect to see the different sides within that community turn on each other with such force that it risked grinding the forward motion of the community to a halt. Yet, I see it happening.

Sure, there’ve been disagreements from the beginning. There have been sides. Some could be dismissed as fringy quacks. Others were in natural opposition. But lately it seems there is less and less reasonable discourse and discussion among those who used to be capable of it. Instead, we get vicious diatribes. There doesn’t seem to be much room any more to speak and be heard by anyone who doesn’t already agree with you. While self-advocates and parent-advocates are duking it out, those with power go along their merry way.

I close my eyes and think about Gifford and the horrible days that followed her shooting. I think about how each side, pretty much ignoring what happened, turned on each other. I think about the recent snafu involving a Republican something-or-other distributing an image of President Obama as a zombie with a bullet through the head. I think about the verbal attacks that followed. I’m not a Gifford fan. Nor am I an Obama fan. I’m just a citizen who wants the middle ground to have a voice, too; a citizen who would rather work to fix what’s wrong with this country than argue who is to blame for its unavoidable ruin.

I close my eyes and try to imagine the autism community reaching the same caustic point. I wish I could say it was unimaginable, but the way we’re going…it’s not. I can close my eyes (and without the benefit of mental pictures) see just how far astray this community could go.

I left the political blogosphere because I couldn’t stand what I was seeing. I’ve “spoken” with several people in the autism blogosphere who are considering doing the same. With all due respect to what they were trying to do, the people who are calling that recent “dialogue” snafu a success have closed their minds to the terrible consequences of their poor judgment. Diatribes and personal attacks are not steps towards productive discourse. For many, that was a last straw. They’ve opted out of such “discussions.” Now, if their voices are heard online at all, it will only be by those who are deemed “safe.” If that’s a victory, then we all might as well pack our metaphorical bags and go home, because if fractures like that continue to be hailed as victories, the autism community will shatter.

I, for one, don’t want to see that happen.

Time is against me. I have an idea. But it has to be done right. I need resources I don’t have. I need collaborators and contributors. I need time. My conservative estimate is that I will need eighteen months to get everything into place in order to launch my idea to the public. A lot could happen in eighteen months. Voices may be lost. Irreconcilable differences may be formed. The autism community could easily shatter in eighteen months.

But I can’t walk away this time. I have to try. And I need to hurry.

A Voiceless Mystery

  • Posted on November 30, 2011 at 8:00 AM

At a time like this, I can’t help but think about the autistic adults who write about how they’re silenced by the community at large, and by the community of parents of children with autism. I think about how they type their complaints and post them online. I think about how they host protests and shout at the marching parents who demand a cure. I think about these autistic adults, and I have to remind myself they’re not wrong. Their needs and their complaints are real. They’re very real and they are very important.

But at a time like this, it’s hard to empathize. Here I am typing away my own complaints and posting them online. It seems, at the moment, that we’re on equal ground. Whereas, the child I shelter is at an extreme disadvantage.

Monday morning I noticed that Alex was limping. It was only a slight limp, so I assumed he wasn’t wearing his shoes properly. He’s a toe-walker—walking as if he’s wearing high-heels even when he’s barefoot or wearing tennis shoes—so he frequently scrunches his toes as deeply into the shoes as they’ll go, with the heel flapping awkwardly behind his foot. I didn’t think much of it.

That afternoon, I got a call from the school nurse. Alex was limping at school. She examined his feet and ankles for swelling, but didn’t find anything wrong. He was calm—a bit out of sorts due to a cold. He came home and continued to limp. I didn’t know what to think, but it didn’t seem to bother him much and it didn’t seem to be getting any worse. I examined his feet, his knees, and his legs for an explanation. I saw nothing worth noting.

Tuesday morning he was still limping. I checked his feet, his legs and his knees again. Nothing. I sent him to school, and he was still limping. They also noticed some mysterious signs—lack of focus, apparent lack of recognition—and worried something else might be wrong. (I still think he’s just feeling a bit off from his cold, because his mood seems fine at home. He’s a bit cranky, but we’ve seen no signs of mysterious blinking or unfocused eyes. But his limping was definitely worse.) So, I took him home, took off his shoes and socks, and examined his feet. One side seemed just a slight bit swollen, but only in comparison to the other foot. His feet are so thin, so bony, and so muscular that a little bit of swelling fleshed out his one foot so it almost looked normal. It was only in comparison that the swelling seems unnatural.

Then, I looked all over the foot that was swollen. On the bottom inner sole of his foot, in a place that’s difficult to see because of the way the shape of his foot has been distorted by his toe-walking, there is a rather large, purplish bruise. I can’t help but feel guilty, since it seems unlikely that the bruise just appeared. We must have missed it.

The place was tender, of course, and is almost certainly the cause of the limping. Still, despite the limp, it’s not slowing Alex down much. He still jumps, walks and plays around. He still resists icing it or any other form of treatment available to us.

I can’t help but think about the ways Willy or even Ben ensures they communicate their discomforts, pains and injuries. I can’t help but think of all those who are “silenced” and yet are able to articulate their hurts. I can’t help but sympathize with the parents who, when confronted with minor mysteries regarding their nonverbal children, gravitate towards the terrible “what ifs,” because I do, too. What if Alex was troubled by something serious, even deadly? How would Alex communicate it? Would we notice the signs in time?

I don’t support the ways that these parents lash out. From angry words to ridiculous claims, they devalue and dehumanize others. I can’t support that. But I can understand the fear that drives them. I share in their frustration, their fear, and their desire to “unlock” their child.

Autism didn’t steal Alex. He’s not trapped behind a wall of autism. I will never support metaphors like this to describe Alex’s experience of the world. I cherish the ways he communicates who he is to those who are willing to listen. I grieve that so many aren’t willing to listen. But how I wish, oh how I wish, that Alex could say, “Mommy, my foot hurts. No, it’s this one, down here. See!”

Giving room for adult autists to speak and to write is worth fighting for. But those words, those revealing words that Alex just can’t say…they’re worth fighting for, too.