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National Forum on Careers in the Arts for People with Disabilities

Keynote Addresses:
John D. Kemp



Tuesday, June 16, 1998 (9:00 AM EDT)

(Introduction by Lisa Thorson, musician)

John D. Kemp

Thank you very much, Lisa. And I too join Tim [McCarty] in thanking you and [pianist/composer] Valerie [Capers] for an incredible performance last night, and for your fine work with Very Special Arts Massachusetts. You are a consummate professional and a good friend. Thank you very, very much.

I'm here with many people who deserve great recognition. It's humbling to be here today, to be able to address you on the issue of employment in the area of arts and our careers in the arts. I have got to say thank you to Paula Terry for the leadership she has demonstrated over the years from NEA to the Kennedy Center; Derek Gordon, Darrell Ayers, for your support and commitment of this project; to Judy Newman and Susan Daniels and all the folks at Social Security and at HHS as well. We are very, very happy and proud that you would take this on and really draw focus to our lives and our careers in the arts.

I'm here with heroes and legends, and you are too. Victoria Ann Lewis, you are my hero. I really appreciate the leadership in this whole area. Charlene Curtis, Lisa Thorson, and in the audience is Gordon Davidson. We are here with people who are leaders in the arts and employment of people with disabilities fields. John Lancaster, my very, very good friend. We have Very Special Arts artists who are represented throughout the audience and also affiliate representatives, too many to mention, and I'm sorry. I would love to say your names, but we have many representatives from Very Special Arts but I think we live for the artists, so the artists really deserve our attention. Two board members from Very Special Arts, Kay Logan and Maureen Summers. Imagine trying to match a staff of artists primarily who all have their own ways of doing things and their own thoughts about how work should be done, their own notions, and together they have listened and learned and pulled together and we really have something wonderful going on with Very Special Arts.

My thanks to Barb Trader, who was instrumental in Paralympics in Atlanta, a gallery director, and a whole lot of folks I don't even know.

Very Special Arts is transforming itself in meaning, in philosophy, and in programs. We can use the additional PSA and we hope by October we will have a new name for our organization. We think it's critical to opening up and making our programs accessible and desired by all artists with disabilities. We champion the right of all people, and especially people with disabilities, to have equal access and full participation in all aspects of life, but most particularly in arts and culture.

We have a registry of 1,200 visual artists for whom we provide assistance in marketing and business planning. We have a new program that's going to come out in about a year that's being test marketed right now called Express Diversity, and it doesn't mean fast diversity, it means being able to express yourself about diversity, where we are developing a teacher training program for fifth grade level teachers to use arts and education and the medium to promote disability awareness and understanding in schools. It is being extremely well received. It talks about heroes and legends and the history of the disability rights movement. It is a powerful, powerful tool. We hope that you will like it. We also have a new program called Co-Co, which is the collaborative online community of artists that is being tested right now and we hope that artists worldwide will be able to join and talk with each other.

As I will [address] about in a minute, most jobs come by word of mouth and most relationships are created between people, and it's our job to create those connections and to promote those connections. Those are just a few of the exciting things that we have going, but you know, here in Washington, you have to be politically correct. (Bear with me, just bear with me if you have heard this before.) I think it's worth mentioning here, with attributes to Gary Trudeau, I should at least say "distinguished staff, friends, persons with disabilities, people of class, no-class people, people of color, colorful people, people of hate, vertically restrained, people of hair, the differently coifed, the opulently challenged, the temporarily sighted, the insightful, the out of sight, the out of towners, the Eurocentrics, the Afrocentrics, the Afrocentrics with EuroRail passes, the sexually inclined, the sexually disinclined, people of sex, sexy people, sexist pigs, animal companions, friends of the earth, friends of the boss, the temporarily employed, the differently employed, the differently optioned, people with options, people with stock options, the home boys, the homeless, the temporarily housed at home, and God save us, the permanently housed at home." Is that everybody?

We are [all] here about jobs, and I wanted to share with you some of the résumé quotes that I have seen, not necessarily at Very Special Arts or at the United Cerebral Palsy Association, but things that you might recognize and hopefully you have not necessarily put on a résumé. Things like: "It's best for employers that I not work with people" [or] "I'm loyal to my employer at all cost" [or] "Please feel free to respond to my résumé on my office voicemail" [or] "I have become completely paranoid, trusting completely no one and absolutely nothing." It's not a good idea to put that on your resume - no. "Please don't misconstrue my 14 jobs as job hopping. I have never quit a job. Reason for leaving last job -- they insisted that all employees get to work by 8:45 every morning. I could not work under those conditions."

Then of course, those god-awful performance appraisals that everybody moans about every year or six months. Supervisors say let's do this twice a year, it will help your progression and human development. All you are thinking about is how much am I going to get paid? I hope this will be the salary increase. But quotes taken from performance appraisals: "Since my last report, this employee has reached rock bottom and started to dig" [or] "I would not allow this employee to breathe; that went beyond their scope of authority." And my favorite of course is "Works well but under constant supervision and cornered like a rat in a trap. This employee should go far; the sooner he starts, the better."

Well, we are here to go farther and get there faster than any previous group of people with disabilities ever. That's what we are here for. I strongly encourage you to think about the future and make some specific recommendations about where we can go. It is wonderful and timely that governments saw fit to allow us to come together and meet and dream, but what I really hope is that we get down to the business of specific recommendations of what's going to happen here and now. What's going to be needed in the near term, but also for those of you big thinkers out there, please tell us how connected employment training works with jobs and how do we get some money and credit and capital to access various markets. We need every bit of thinking along the way. So when reports come out, I hope that they span and bridge these three focus group areas.

I'd like to take a minute just to recognize a friend of mine, my best friend who died about six weeks ago, Paul Kern. John and I have been very close to Paul. He died on May 3rd. He was President and CEO of the Dole Foundation on Employment for People with Disabilities. We all loved Paul Kern, and he said it like it is and was, and he told the truth and he didn't get caught up in the bulls---, pardon me, of life. He was true to the values of ADA, quality of opportunity, independent living, full participation and economic self-sufficiency. You want to believe and dream about where Paul wants to take us.

I strongly urge you to become members of the American Association of People with Disabilities. You can tune in to the Web site: aapd.com, not ".org". (The American Association of Pediatric Dentists got that first, so "aapd.com".) You can join on the Web. It's reasonably priced. You get a magazine. The next issue will be devoted to Paul. You can subscribe and join through the magazine. In memory of Paul, we'll go on.

Well, regarding employment. What can I possibly say that you don't already know? Unemployment at 70 percent. Those unemployed people with disabilities want to work and are capable of working. Most people with severe disabilities remain unemployed even with ADA, reasonable accommodations technology and sharing jobs, work from home. Combine disability with minority status and the unemployment skyrockets to astronomical proportions. Government programs generate approximately 5 percent of the work in this country. Most people find their jobs are worth nothing and today we have a disability dependency payment system of about $200 billion and we only invest about $2.7 billion, 1 percent.

Is this really an investment philosophy? Hardly. I could go on. I could go on with lots of horrific numbers and I have done this in the past. It's not necessary. I'm talking to those who are enlightened already. People with disabilities have never had a better group of people with disabilities in the highest governmental positions to help us solve our problems. But we have very, very few people with disabilities in the highest elected offices in this country and to date we have done very poorly competing for our nation's resources. But we got ADA, we moved it up to another level of competition for resources. It's no longer cannibalizing each other's programs at the federal level in the area, servicing the people with disabilities. We now should be asking the question, why does the Defense Department need $245 billion and what are we doing with other areas of government?

It is high time we all become political, and we must vote and we must demand accountability of our elected officials in terms of our needs. How many times have you ever heard someone going to a political debate and disability-related questions being asked? Not very often, if ever. But those are our issues and these issues affect 20 percent of the U.S. population. The American dream, after all, is our dream too.

The National Council on Disability in 1996 issued a report after 300 grassroots advocates convened in Dallas. The report is called Achieving Independence. If you want a copy of a great report, you can get it off of the web at ncd.gov. And you can download it. It's called Achieving Independence. It is a powerful document. It has been used already very effectively, and there are many recommendations in the 11 major categories that have been driving policy issues here in Washington and in state capitals.

What were some of the overarching themes in that meeting? Existing laws should be more vigorously enforced. This is one of those ADA kind of issues. Existing laws should be more vigorously enforced. We have very good civil rights laws. They are not being enforced. And part of it is the appropriation of dollars to support the enforcement of ADA and as long as we remain silent, they will continue to underfund enforcement issues.

There is a book out by Jim Charlton of Chicago called Nothing About Us Without Us. People with disabilities should direct policy and decision making when they are affected by the outcome. Now, there is a good thought. If it affects our lives, we ought to have a say in it.

Another recommendation, outreach and awareness campaigns must be launched to educate the public about the human and silent abilities of achieving independence for people with disabilities. How many years have we been saying this? How many years have we been doing this? Maybe it's high time that people with disabilities, maybe the artists of the world tell it like it is, about how our lives impact all of humanity, how we improve the fabric of society, how we contribute to our economy, how we are a part of our families and our communities. Let's take control of this issue.

Principles of universal design should be universally applied. Amen to Ron Mace. What a hero. Assistance, services and supports for people with disabilities must be further developed as a part of the mainstream of our life. It is not inappropriate for employers to think that personal assistance shouldn't be provided in the workplace. It should be provided as a form of reasonable accommodation for people who want to work. When you talk about careers in the arts, it's artists, behind-the-scenes folks, marketing people. The arts and culture business is a big business in this country and we are not there.

The overarching issue that I know is being addressed by the Presidential Task Force on Employment of Adults with Disabilities, obtaining accurate data about people with disabilities. We have at least 65 federal agencies that have different types of definitions of who is qualified for their programs regarding people with disabilities. Nobody can get a handle really. We take the ADA definition, we know it's squishy because it has to be, but we have to get an idea of who is a person with a disability in this country and how do we benchmark it and measure our progress in employment terms.

In the employment arena specifically, disability should be an integral part of our national employment policy. It is not. It will start to be, I think. Accommodations and specialized services should be provided as part of generic programs for people, for all people, but so that people with disabilities have the right to access these. This is what we are doing at Very Special Arts.

Lisa mentioned the Cultural Access Institute. It is going to the institutions out there, the cultural institutions and saying you have ADA obligations, if you don't understand how to do it, we will help you achieve access for all individuals, including people with disabilities. If we have to be the inclusion experts for 20 years until it's commonplace that all people have access, then we'll do that. That is a critical issue.

There is a task force, and I hope John Lancaster will talk a little bit about the Presidential Task Force. They are going to study such things as workplace, transition from home to work, or school to work, transition from welfare to work. They are going to look at small business and entrepreneurship, which may I just say used to be the end result of all the discrimination, so people would go back and open up a wheelchair repair shop in their garage and repair hearing aids. Today we say let's be software developers and let's get rich. Let's be entrepreneurs and work in those spare bedrooms with our computers. Let's have a part of that American dream.

And the youth. In a week or so the National Council on Disability will be conducting a youth leadership program, and our whole approach is to send the clear message that the goals for their lives are employment and independence and not lifetimes of dependency or support on benefits. We are going to tell them that there is work, and [that an achievable goal is] to be independent.

I have mentioned media campaigns. I have talked about the whole notion of entrepreneurship. I know I don't have a lot of time so I'm going to zip right to technology. I want to just suggest that technology, that awesome nearly limitless power to create and communicate is a tool for us as long as we have access, full access to it. And that's for everybody. And if we don't build in an infrastructure that permits all people with any type of sensory disability to be able to access and use at full speed, if we don't imbed the systems with that kind of access, we will be forever outside the mainstream for our future lives. By the shear numbers of Internet users and the use of multimedia, by home page developers, some believe that the future, the language of the future will be the language of the arts. Do you see a simple home page today that has black type, so to speak, on white background? Rarely. Maybe on a chat room and maybe on what's going out on the Internet right now but when you tune in a home page, they are trying to grab your attention. They are using graphics. Things are spinning and popping and jumping. How do we make that whole forum accessible?

The language of the future will be the language of the arts. That's us. We have an opportunity not only to create but to enforce accessibility. Earlier this year for the first time in our history more telephone lines carried data than voice transmission. Our whole world of information sharing is changing. To reach a level of 50 million users, it took radio 75 years, it took television 22 years, it took personal computers 16 years to get to 50 million users. It took [the] Internet four years. Think about this. And if you really want to get scared, think about this: In the age 15 to 24, more kids or young adults were online during prime time television than they were watching TV. Exactly. Good. It is powerful. The question is, what are they watching? And then of course, how does it drive the marketers who wish to have a powerful say in whom they reach.

I know I'm about out of time. I have to talk to you like five more minutes. I hope you will let me have that. I think that the issue of disability culture is critical to all of us in this room, and it is not an exclusion of nondisabled individuals. It is not that at all. It is to say that people with disabilities to be better citizens, to be better students, to be better family members, have to have a better feeling about who we are. We have to be proud of the fact that we are rightful citizens of this society, and if we draw from each other, then go for it.

When I'm going into a room and I find other people with disabilities, I make an immediate connection. What are some of the -- first of all, I have to say Carol Gill, Steve Brown, Victoria Lewis, there are people that are writing and talking about this issue, and it is a powerful issue. What are some of the core values? An acceptance of human differences. We accept and understand and appreciate differences better. We have a matter-of-fact orientation to helping. We believe in interdependence. Yes, we believe in independence but we also know that we are desperately linked to other people in our communities. Right now we are linked here with the sign language interpreter and technology and a microphone and the lights. There is a tolerance for lack of resolution in our lives. Nothing is ever quite settled with the number of eligibility issues we have to face on a daily basis, and the brouhaha and the confusion that goes around our lives.

We use disability humor. The ability to laugh at the oppressor, at our own situations. That's part of our function. Obviously a careful honed capacity for closure and interpersonal skills. What I really want to say is, it is our ability to read the attitudes of others that I think is critical. This is very important for all of us. If you want to read a good book, Emotions in Intelligence is very good.

I see we are running out of time. I'm going to wrap this up. Tim is going to drag me off. What do we get from disability culture? Fortification. We don't get this intergenerational transfer of lore about ourselves as African-Americans or Hispanic individuals or others. My Dad was not a quadruple amputee. I get my information from friends. There is a unification of politics and disability so that we find strength in numbers, an ability to communicate which promotes our issues and a recruitment of sorts with other people today that drives our pride. We should be proud of who we are. We should tell young people about it. (Two minutes, and I'm done.)

Good recommendation. Be responsible for your own lives, your own happiness and your own behavior. Be responsible for them. Please be well informed about the issues you are confronting and become political in every way and at every level. Apply your own creativity to the personal and public issues confronting you. I think the whole voucher system has to be relooked and retested to allow people with disabilities to become recipients of money, become the consumer, and to be able to go around with their vouchers and say who wants to serve my needs and how do I know that you are going to be able to meet my needs.

I want to see outcome measures. I'd like to see the social investment help us but we will not, their costs must never be weighed against civil rights. If we cost more money to be citizens, that's our right as citizens. The United Cerebral Palsy Association says that an advocate is never, ever satisfied with the status quo and collectively, our status sucks right now. We better get going.

Let us not forget the powerful part that brought us all together here. Not to apologize for our disabilities. It is the arts that brought us here, thankfully, to learn, to deliberate, to dream of a better tomorrow, and it's the fundamental elements of the arts that inspires each and every one of us. It's strength that empowers us, honesty to confront our difference, integrity which allows us to trust and be trusted, beauty which inspires us, curiosity to expand our perspectives, understanding which gives us tolerance and kindness which heals. We look forward to a wonderful future and a career in the arts.

Thank you.


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