Not Curing Doesn't Mean Not Helping

I was reading a blurb in Newsweek about Ari Ne'eman and how his nomination to serve on the National Council on Disability has a hold on it, presumably because he is against finding autism "cures." I read this comment trying to justify why parents would be upset at his stance:

....we love and accept all the beauty and complexity of our autistic children, and yet we also long to see them achieve at their fullest potential in the world.  We need to work to make the world a more accommodating place for disability; but we also need to help our children perform more independently in this demanding world.

You know what? That's a total misunderstanding of what it means to be against finding a cure. I've met Ari Ne'eman, so I've (hopefully) got some clue about his stance here. Ari was given therapy and supports as a child, and he supports doing that for others. Aversives and restraints, notsomuch. You might say that he longs to "let autistics achieve their fullest potential in the world" and would support helping children "perform more independently in this demanding world. "

Seriously folks, the goals of the neurodiversity movement are not so different than the goals of the average parent. The average parent doesn't want to cure adults comfortable with themselves, and the average ND advocate doesn't want to keep your child from developing and growing.

The difference is that ND folk usually think that "cure" means genetic testing and aborting autistic fetuses.  Parents often think "cure" means finding some super effective treatment for their child, and when they hear someone is against cures, they think they're also against treatment of any sort. That is usually not the case, and it's certainly not the case with Mr Ne'eman.

If we face reality, there is no magic pill or super therapy that will turn an autistic child into a non-autistic child. There is unlikely to ever be such a thing. It would be lovely to have an "easy" button to take what we see as severe hardships and make them go away, but such a thing is a fantasy. What we all really want is to help our kids live up to their best potential and become as self sufficient as possible. That's what disability rights advocates want, too.

Jay Turnbull

Jay Turnbull died in January at age 41 of an unexpected heart attack. That part is not as important to the story as his life is. You see, Jay faced multiple disabilities that would ordinarily meant that his life was spent mainly inside some sort of sheltered group home or cared for full-time by a family member. That's not what happened. 

Jay worked at a real job and earned actual income, not the pretend salary of group homes. He lived in his own home. He had friends. He had regularly scheduled activities and a social life. He was part of the community, not someone shut up somewhere behind closed doors. 

Jay was autistic and intellectually impaired. He had bipolar disorder. He'd been kicked out of a group home for behavior issues like biting, hitting, and choking. He was functionally illiterate and couldn't drive. Jay's mother was constantly told that he was "the most disabled" student in the class and reminded that her expectations were too high. 

I saw a presentation last week by Jay Turnbull's mother, Dr Ann Turnbull, and I'm still processing everything. I can't type without tearing up a bit. I'm still crying just a bit.  Forgive me if I get some of the details wrong. I'm going from memory. 

Basically, he grew up with some good and some bad educational experiences, and once he aged out of the school system, they put him in a group home. This was 20 years ago, and that was just what you did at the time. Well, it was a nightmare. He had horrible behavior problems there and they kicked him out of the home. They recommended a more restrictive setting, which was the alternative at the time. 

When his sister visited him in the hone, she was furious. She told her mom, "I don't want to live there. You don't want to live there. Why is it ok for Jay?" She also found out they were waking him up by squirting him in the face with a water gun in the morning. Does that sound like dignity and respect?

So they decided they'd work out a way to do better. She found a job for him at KU. She felt guilty about it at first, since she was using her position to find him a job, but then she realized lots of people find jobs through friends and family. He sorted recycling, delivered mail, did clerical work, and did other things they'd have to pay someone to do anyway. It was a real job. He needed a job coach, but he was able to do everything. 

She hired someone to take him to the gym to exercise, and from there it ended up working out that he'd regularly attend frat parties on campus. Yes, frat parties. His behavior issues were totally not issues when it comes to frat boys. Really, what's a little hitting and biting and inappropriate farting in a frat house? Do they care if you're flapping your hands or singing really loud to the music? They adopted him as an unofficial member, and after that he was given honorary membership to a different frat house in town. 

It was his frat brothers that ended up proposing the solution that got him a home. With the help of his parents (who could manage money and plan budgets, something he could not do) he moved into his own home. Several frat brothers became roommates. In exchange for free housing (and salary for his primary assistant,) they helped him with daily living issues like cooking and cleaning, setting up his budget, scheduling activities, and buying clothes. And they genuinely liked his company. 

That's something she stressed over and over. He was surrounded by people who genuinely liked him. Some roommates would come and go as they graduated and moved, but many stayed. He most recently had the same roommates for seven years. 

Meanwhile, he had time for activities, such as music therapy, speech therapy, yoga, and weekly massage, paid for with his medicare waiver. He rode taxis and then later the bus to work and around town. He regularly went places. He found fierce advocates in many places, such as the owner of a local restaurant who trained her staff on how to treat him. She told them that he'd always want to be seated in the same spot, so that's where they should seat him. That he'd always want spaghetti and meatballs and couldn't read the menu, but that didn't matter. They should always give him a menu anyway and take his order, just like they would any other customer.  

So one morning, Jay got up and told his roommates that he'd like waffles for breakfast. He went to the bathroom to get ready for work, and he died. The university published a statement mourning the loss of their longtime employee, not the part time worker who needed a job coach.

That, my friends, is dignity, respect, and inclusion. And exactly what we all want for our kids, no matter their level of ability. And that's what neurodiversity advocates are trying to say when they defend themselves against accusations that the movement doesn't include those with the lowest functioning level.