We first learned about Dr. Alan J. Brightman when we reviewed his outstanding book, DisabilityLand. We were struck by the thoughtfulness and honesty of the book, as well as its stunningly beautiful graphics. We’re happy to report that Dr. Brightman, Senior Policy Director for Special Communities at Yahoo!, Inc., graciously agreed to an interview, where we took up way too much of his time, but came away reminded of the Margaret Mead quote, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed it is the only thing that ever has.”

Disaboom:  When did your interest in assistive technology – and people with disabilities – begin?
Dr. Brightman:  By the time I was in grad school [Ph.D., Harvard, Education], I knew where I was headed. I hadn’t quite planned it out in terms of direction, but two influences shaped my thinking.

First, as part of my program, I volunteered in state schools (institutions), and I couldn’t get out of my head that there were some people 20 minutes away from me who lived like that…it just seemed fundamentally wrong. Second, a lot of the topics in school had answers already, and this field [assistive technology and disability] had a bunch of questions with no answers, or no easy answers. So it always struck me as a cool challenge.

Some of the questions I had were if all these folks in the institution go out into the community, how are we going to make that happen? Is that a good thing, is that not a good thing? Or the kid questions: who are those strange people that I’m not allowed to go near? I think my direction mostly showed itself as I started to wander around the world with this filter in my head. It became obvious how unaware people were about disability issues, and I thought that’s where I’m going to start, I’m going to start with awareness.

Disaboom: So how do we move beyond “political correctness” to authentic connection, or discussion?
Dr. Brightman:  One thing that DisabilityLand shows is that if you’re worried about correctness, you’re never going to meet the person. If you’re worried about correctness, you’re worried more about yourself than the other person, you’re saying “I don’t want to make a mistake, this is awkward for me.”

What we train people at Yahoo! about—just as we did at Apple—is this: “I can teach you about disability so you can get a perfect score on a test about disability, but I can’t make you comfortable with someone in a wheelchair or someone who’s deaf or someone who’s blind… that’s kind of up to your constitution and your willingness to take a risk and discover that gee, the wheelchair tipped over and the guy didn’t break.”

Part of the problem is that so many of us have so little social practice interacting with disabled people that we’re only good at socializing the way we normally socialize. Then along comes someone who doesn’t look like the people we socialize with all the time, and you get a little tongue-tied, you feel a little awkward, not quite your regular, spontaneous self. However, as people with disabilities become more and more visible in the world—at work, at bowling alleys, in the mass media—this awkwardness, I hope, will decrease.

In fact, you know what’s interesting to me now? At Yahoo!, our accessibility team will often ask our co-workers why they think people with disabilities matter to Yahoo!  And almost everyone will say it’s because we’re charitable, we’re a good company, we have a nice heart, we’re loving… but, of course, the real reason people with disabilities matter to Yahoo! is that they’re potential customers. And they have money. So if it makes you feel good thinking that we’re all just nice guys doing a nice thing by paying some attention to people with disabilities, that’s fine. But, we tell them, remember that you’re working in a public company whose shareholders expect profitability. And if we build an online store at Yahoo! that some people can’t easily use—or can’t access at all—then we’ve suddenly gone into the sales prevention business. Not a smart way to do business.

Disaboom:  Do Yahoo! employees understand the size of the discretionary income at stake?
Dr. Brightman:  That’s the other surprising thing to most salespeople as well as our web designers: how many discretionary dollars exist in the disability community, how large a market segment it is.

The other thing that I find interesting is it’s not just about people with disabilities. I don’t know what kind of surveys you may or may not do about who’s using or who comes to Disaboom, but I would be really surprised if there weren’t a lot of non-disabled, advocate, ally-type people who go there as well.

That’s certainly what my experience has been. In fact, there’s an old, unpublished University study that found that for every individual with a disability, there are 2.7 people around that person who care passionately about what happens to him or her. Could be a family member, could be a next-door neighbor, could be a rehab specialist, could be a peer. It doesn’t make any difference. If something good in the world is going on with regards to people with disabilities, those 2.7 will often be the first ones to get energetic about spreading the word. They make sure that lots of people know about it. Of course, the same holds true for things that aren’t so good. These same 2.7 people will spread that news around as well.

So if Disaboom or Yahoo! or any company wants to attract and engage this segment, it isn’t just the 60 million people in this country that they should be targeting. It’s also the 2.7.

Incidentally, the number 2.7 has probably changed since the study was originally conducted. But the exact number isn’t really important. What matters is that marketers, for example, understand this other aspect of the disabled community, the non-disabled individuals who will carry the marketing message, good or bad.

Disaboom: A huge universe of people are affected, and soon to get much larger as the “aging into disability” trend continues to grow. What about kids with disabilities, and their families?
Dr. Brightman: It angers me to see how parents of kids with disabilities are often forced to become super fighters—Olympian advocates—for their children.

When I was at Harvard, we ran a residential summer camp in New Hampshire for developmentally disabled kids. But we didn’t just accept the campers for our eight-week program. We also required the parents to participate in our fairly intensive training programs as well so that they would become better teachers for their sons and daughters. Our parent training experience, in fact, led to the publication of our book: Steps to Independence: Teaching Everyday Skills to Children with Special Needs, (Brookes Publishing Company, 2004). This book is now in its fourth edition and has so far been translated into eight languages.

The goal of the book, as I said, was all about training parents to be better teachers of their kids. So no matter what your goal is, if it’s to help Billy drink from a cup, or potty training, or whatever it might be, all we cared about was helping parents become good teachers. But then parents began reminding us “I can’t be a full-time teacher. I’m also a full-time spouse. And I have two other children. And I belong to several clubs…” We had to come to grips with the fact that we were training teachers, if you will, who didn’t have an ideal classroom situation. They had real life happening all around them. And unlike some of the neatness conveyed in the book, that real life stuff can get awfully messy.
 
That’s why each edition of the book changed over time. We of course kept all the guidance about teaching, but we added, for example, information about assistive technology and the Internet that wasn’t in the original version. We also added strategies that parents could use to become more effective advocates for their kids. Because that’s really what it comes down to, isn’t it?

Disaboom: Speaking of the training, a lot of your early work for Apple involved training teachers to use computers as teaching tools, especially for students with disabilities. What’s your feeling about the state of K-12 education today?
Dr. Brightman:  I started Apple’s Worldwide Disability Solutions Group in 1985, that was way back, when our premiere product was the Apple IIe.

Well, it turned out we had to do an enormous amount of in-service training because, as teachers lamented: 1) I have this strange new machine in my classroom that I’m not sure how to use, and 2) there’s also these strange new kind of kids in my classroom that got imposed on me, too, and I’m not sure what to do with them, either.

So this technology and these kids with disabilities were imposed on the regular education teacher who had no training or preparation and in fact never voted for either to begin with. So… we did a lot of teacher training and in-service work so that mainstreaming both the computers and the students with disabilities would eventually work its way into the DNA.

I wish education had a more powerful, lightning-rod kind of spokesperson who could say “this has got to change, and here’s how we’re going to do it.” That’s the kind of inspiration that’s required, I think, if educational reform is ever going to be more than just words. But I have no idea who that person is. In fact, when I was at Apple, the company had never had a Vice President of Education. It had a K-12 group, it had a higher ed group, and it had my group, special education. And suddenly the people who led these three groups were asked to recommend names for a brand new position of VP of Education.

So I’m scratching my head trying to think of who it is that just kind of blows you away, that people would listen to. And in the end, the only name I could come up with was Big Bird. You know what I mean? Big Bird, I thought, could have really affected education policy nationwide. And he would have fit right in at Apple, too. Naturally, my VP recommendation wasn’t all that well received.

Disaboom:  Is tackling education reform too risky?
Dr. Brightman:  With such an enormous emphasis on test scores, I think it is. That’s why when I tell teachers I think they should dream a little, because maybe that’s what kids need to learn – how to dream and think outside themselves, think creatively and all – they look at me strangely and say, “Don’t you know what a classroom is today? Don’t you know what my principal’s going to say if I tell her ‘Well we didn’t actually do math today, but we were doing a lot of really good dreaming?’”

Disaboom:  So some changes, but not nearly enough. What are you finding to be the most encouraging changes, and the most discouraging lack of change?
Dr. Brightman:  I think the answer’s the same, because without a doubt the most encouraging things that I’ve seen are all on the legislative side.

The legislation that has happened since my early Apple days until now is really exciting; when you read the laws it’s kind of thrilling that the country’s gotten more progressive, more accepting of diversity, and that’s all wonderful.

However, the discouraging thing is, those of us who were around when the ADA got signed thought this is great, now people with disabilities are going to have jobs, things will be easier, they’ll be employed, sky’s the limit. Well, the sad fact is that when the ADA was signed, roughly two-thirds of employable people with disabilities were not employed, and today roughly two-thirds of employable people with disabilities are still not employed. So that’s really the big discouragement, particularly when so many people could be working at jobs from home. To me, that’s very disappointing.

Disaboom:  And it doesn’t appear that these statistics are improving for students with disabilities who graduate from college, which is especially discouraging.
Dr. Brightman:  So many of these students go to college, then end up with no job opportunities.

With the ADA, it’s just like you go to see a really great movie, and you talk it up, and then your friend goes to that same movie expecting to be levitated off her chair, and then because she wasn’t, she thinks, oh, the movie wasn’t quite as good as Alan said it was. The expectations that arose around the time of the ADA signing were so great, that no one was willing to play the role of the Emperor’s New Clothes – nobody was willing to say, but the King is naked.

So, it’s a hard reality now, and I’m not sure how that’s going to get solved, because the other piece of this, being unemployed, is the whole health insurance dilemma. In other words, I could get you a job, but if I do, the public support that’s sustaining you now will go away, and the fact that you’re on your family’s health insurance policy is also going to go away, and you’re going to be less well-covered once you have a job.

So that puts you in quite a bind. You want to be a member of the workforce, you want to be a taxpayer, you want to play a part in building the world and society, but you know that’s going to cost you.

I get more and more impatient with waiting for change.

Disaboom: How do you think the Obama administration will impact change for people with disabilities?
Dr. Brightman:  I have a huge amount of hope with the Obama administration. During the campaign, I was a member of Obama’s Disability Policy Committee, and just to hear the level of discussion, and smarts and sophistication in that group alone, really gave me hope. I thought, we’ve got some smart young people who know what they’re talking about who don’t want to accept the status quo.

How much of it you can do inside of a big bureaucracy like the federal government, that remains to be seen. Because it’s really funny – you can move huge mountains sometimes with the stroke of a pen, but I was at an access board hearing in Boston a couple of weeks ago, and the people who presented at the hearings were not worried about moving mountains.

They wanted to know, instead, why the brick pavement that seems to be such a big deal in Boston is even allowed, because when the brick rises up an eighth of an inch, then I’m at risk of falling down because I don’t have very good balance. Or, I need to get an MRI or a physical, but none of the hospital equipment or environment is accessible to me. So, suddenly you realize, okay on one hand, let’s move some mountains and change the world. On the other hand, there’s lots of little everyday annoyances, real inconveniences, that also need to be taken care of. How do you tackle it all?

[Note from Disaboom: as part of the community trying to make sense of that bad photograph, we appreciate not only Dr. Brightman’s advocacy, thought leadership, and dedication to improving the picture, but also his unwaveringly honest evangelism.]

Books by Dr. Alan Brightman
DisabilityLand, by Alan J. Brightman and Richard Ellenson. Select Books, 2008. 135p. ISBN 159079124X.

Connections: In the Land of Disability, Alan J. Brightman. Palo Alto Press, 2006. 136p. ISBN 0976651211.

Steps to Independence: Teaching Everyday Skills to Children with Special Needs, 4th ed., by Bruce L. Baker and Alan J. Brightman. Brooks, 2004. 359p. ISBN 1557666970.

Independence Day: Designing Computer Solutions with Individuals with Disability,  by Peter Green and Alan J. Brightman. Henry Holt, 1991. 135p. ISBN 0805017364.

Ordinary Moments: The Disabled Experience, Alan J. Brightman, ed. Human Policy Press, 1985. 160p. ISBN 0937540110.

Like Me, by Alan J. Brightman. [out of print] Little, Brown, 1976. 48 p., ISBN 0316108073.