Thursday, October 7, 2010

Ari Ne'eman Interviewed at Wired.com

Ari Ne'eman, founding president of the Autistic Self-Advocacy Network and now a member of the National Council on Disability, spoke to Wired.com back in July, and they have now posted the interview on their Wired Science blog.

Here are some excerpts from the interview that I thought were particularly awesome:
Wired.com: Many Wired readers work in the tech and software industries. How could they help improve the lives of autistic people?

Ne'eman: If we put one-tenth of the money currently spent on looking for causes and cures into developing technologies that enable autistic people with speech challenges to communicate more easily --- so-called augmentative and alternative communication [AAC] --- we'd have a vast improvement in the quality of life for autistic people and their family members.

We've already seen some very promising tools for AAC and other assistive technologies start proliferating on the iPad and the iPhone. But Medicaid won't pay for such dual-use devices, despite the fact that having an AAC app running on an iPad may be much cheaper and more functional than carrying around a dedicated AAC device. That should change, because AAC devices are currently too expensive and often not versatile enough to be used in a diverse set of circumstances.

Second, I'd love to see research into ways of using social media to improve access for disabled people. If there was some kind of web-based tool or mobile app that enables people to flag buildings with "very good" or "very bad" access, it could spur a lot of positive social change.

Finally, there should be websites or apps that enable disabled people to rate their service providers and record their experiences, like the websites that already exist for college students to rate their professors. The internet has proven to be very important for autistic people, because it's given us a chance to connect with each other and start to form a culture of our own. We've barely begun to tap the potential of handheld networked devices to assist with the kinds of deficits in executive functioning and life skills that many of us on the spectrum face. Mobile devices and apps could be very helpful in improving prospects for employment and education across the whole life span of autistic people --- not just when we're kids.
I love Ari's ideas about assistive technologies --- I would never have thought of using an iPad or iPhone as an AAC device*, but now that he suggests it, I can imagine it working well for that. I'm also enthusiastic about the web-based accessibility- and caregiver-rating. The accessibility-rating for places could speed up the currently-very-slow process of getting city governments to respond to people's complaints about poor accessibility through the Internet's ability to gather a critical mass of people calling for a given thing much more quickly than traditional, localized grassroots organizing. (Darned if I know how mobile devices and apps could help with education and employment, though, apart from their utility as AAC devices that he already mentioned).

(I can pretty easily imagine why Medicaid officials --- assuming they know about AAC apps for iPad/iPhone, which maybe they don't --- would be loath to use Medicaid funds to cover those things, even if they are cheaper and more practical: can you imagine the scandal if some deficit hawk in Congress were to discover Medicaid funds being used to provide iPhones to poor people with disabilities? The horror!)

More Ari:
Wired.com: Some of your critics suggest that as a "high-functioning" person with Asperger's syndrome, you present an overly rosy picture of life on the spectrum. You work in D.C., do a lot of public speaking and networking, and are obviously capable of things that someone who lives in a wheelchair or can't speak cannot do.

Ne'eman: I know quite a few people in D.C. who use wheelchairs, and I know people who use AAC devices and work in public policy. Some of my mentors fall into those categories. So while I'd agree that there are many things I do that some other autistic people can't, I wouldn't say that it's the fact that I'm not a wheelchair user or an AAC user that makes that the case.

I recognize that I'm fortunate in many respects and am able to do things that some other autistic people can't do. But I would also point out that these things didn't --- and don't now --- come easily to me. I've been fortunate to be able to count on the inclusive culture of the broader disability-rights movement to help support me.

There's a strange idea out there that neurodiversity advocates think that autistic life is all flowers and rainbows, but I don't know anyone who thinks that way. Most of us have had deeply personal experiences with social isolation, bullying and abuse, lack of support, discrimination, and plenty of other problems. But it's much more productive for us to focus on how we can improve people's lives than to keep presenting people as pitiable burdens.

No more pity. It doesn't help anybody.

Many of the bad things that autistic people struggle with are things that happen to us, rather than things that are bad about being autistic. Why is that an important distinction? I remember reading a blog post from a parent who pointed to two news stories. One was about a mother who had murdered her autistic child because she couldn't deal with the fact that he wasn't normal, and the other was about a school aide who had abused a child. And the blogger said, "This is what autism is like. That's why we need to find a cure."

I find that kind of thinking despicable: One would think the fault there isn't with autism, but with abusers and murderers! As long as we confuse bad things that happen to autistic people with what it means to be autistic, we're not going to be solving the problems that autistic people face in any meaningful way.
...
Wired.com: Though you criticize groups like Autism Speaks for focusing on a cure, if someone offered you a pill to wake up tomorrow without autism, would you take it?

Ne'eman: That's an intensely silly question. How can I draw a line around one part of my brain and say this is the autistic part, and the rest of me is something else? That way of looking at autism is predicated on the strange idea that there was or is a normal person somewhere inside me, hidden by autism, and struggling to get out. That's not reality.

As a society, our approach to autism is still primarily: "How do we make autistic people behave more normally? How do we get them to increase eye contact and make small talk while suppressing hand-flapping and other stims?" The inventor of a well-known form of behavioral intervention for autism, Dr. Ivar Lovaas, who passed away recently, said that his goal was to make autistic kids indistinguishable from their peers. That goal has more to do with increasing the comfort of non-autistic people than with what autistic people really need.

Lovaas also experimented with trying to make what he called effeminate boys normal. It was a silly idea around homosexuality, and it's a silly idea around autism. What if we asked instead, "How can we increase the quality of life for autistic people?" We wouldn't lose anything by that paradigm shift. We'd still be searching for ways to help autistic people communicate, stop dangerous and self-injurious behaviors, and make it easier for autistic people to have friends.

But the current bias in treatment --- which measures progress by how non-autistic a person looks --- would be taken away. Instead of trying to make autistic people normal, society should be asking us what we need to be happy.

*Partly because I can speak, and thus don't need to spend a lot of time pondering AAC, but mostly because I am kind of a technophobe and don't use a mobile computer; I don't always grasp everything they're capable of doing.

3 comments:

Jess Kahele said...

"(Darned if I know how mobile devices and apps could help with education and employment, though, apart from their utility as AAC devices that he already mentioned)."

From my perspective as an autistic person who can also speak well I have the most trouble communicating with people in a face to face or phone call situation probably due to eye contact anxiety and such. I think that Ari is touching on the fact that mobile devices can be used as a more effective means of communication with coworkers, bosses, teachers, etc. Just because you can talk well doesn't mean you can communicate well. Verbal communication is much more than words and many autistics are much better at electronic communication and feel less hindered by it. Instead of taking a dozen tries to call up someone because you keep putting off, mobile apps allow you do get it done quickly and efficiently.

Jess Kahele said...

"(Darned if I know how mobile devices and apps could help with education and employment, though, apart from their utility as AAC devices that he already mentioned)."

From my perspective as an autistic person who can also speak well I have the most trouble communicating with people in a face to face or phone call situation probably due to eye contact anxiety and such. I think that Ari is touching on the fact that mobile devices can be used as a more effective means of communication with coworkers, bosses, teachers, etc. Just because you can talk well doesn't mean you can communicate well. Verbal communication is much more than words and many autistics are much better at electronic communication and feel less hindered by it. Instead of taking a dozen tries to call up someone because you keep putting it off, mobile apps allow you to get it done quickly and efficiently.

Lindsay said...

Jess, I just found an article in some autism-related journal (either Autism or the Journal of Autism and Developmental Disorders, I forget which) that discusses this very thing!

I'll try and post about it soon --- this whole issue of mobile-computers-as-assistive-technology is blowing my mind.