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The Time to Rise Will Come Again

by Frank Bowe

A while back, I wrote a piece here on Ragged Edge Online about how the movement soon will get a big jolt from the aging of the 76-million strong Baby Boom generation.

Reader response has been gratifying. Along with the customary "thanks for writing this" notes came a small flood of e-mails with questions. Most were variations on a theme. "Why aren't our people out in the streets protesting?" asked one, urging civil unrest. "Where are the next-generation leaders?" inquired another, noting that many of the "names" of the disability rights movement were gradually leaving the stage, via retirement or death. "How do we recapture the magic of the 1977 sit ins?" queried a third, recalling the 10-city protest that I led to help make section 504 effective.

These are reasonable questions. After all, some 70 percent of American adults with disabilities remain jobless, about the same as in the pre-ADA days. People are struggling. Almost every week seems to bring more news about threats to Medicaid, accessible and affordable housing, and even the right to bring suit. Why aren't people crashing the ramparts? It's also true that today's disability rights leaders tend to have greying hair. From Bob Kafka and Nadina LaSpina of ADAPT, Americans Disabled for Attendant Programs Today, to John Lancaster and Dan Kessler of NCIL, the National Council for Independent Living, our most visible leaders tend to be on the far side of 50. And it has been 15 years since the national activities that brought us ADA, not to mention 28 years since the 504 demonstrations.

Here I write about how I see the questions and attempt to answer them. Of course, others will view things differently and will have other opinions. One unique feature of the online Ragged Edge is that readers can easily post comments. I look forward to reading those.

The Times, They Are A'Changin'

Former New York Times reporter Eileen Shanahan was the PR person for the U.S. Dept. of Health, Education and Welfare at the time the 504 protests were occurring. Here she shares her impression of the protests.

Part of the story, it seems to me, is timing. Let me begin by sketching the environment in which the 504 protests emerged. Jimmy Carter had just been elected President. He brought virtually no foreign policy experience to the position, and the country really didn't care. Americans were looking inward. We wanted to focus on domestic policy. Bear in mind, too, that the Spring 1977 demonstrations took place just a few years after the 1964 Civil Rights Act (including Title VI) and the 1972 Higher Education Act Amendments (which gave us Title IX). Those earlier laws famously were accompanied by very visible protests – the March on Washington of 1963 and the Miss America protest of 1969 among them. So the stage was set. We had a country ready for domestic change and some recent precedents that helped our citizens to understand what we were trying to do.

We do not live in that kind of a country today. As a nation, we are much more preoccupied by Iraq, Afghanistan, and the recent unrest in France (the car torching in late October and early November), in London (the July 7 bombings), not to mention the horrors of Pakistan (the October 8 earthquake) and the earlier hurricanes Katrina and Rita. In this post-9/11 period, the news is dominated by truly frightening images. Meanwhile, the average American today associates words like "protest" and "demonstration" with violence, hopefully foreign. That's why it is so hard for ADAPT to get media coverage for their protests in Washington, in Tennessee, and elsewhere. News editors simply decide that those "actions" are not news.

Why People Rise Up

photo of wheelchairs rolling down highway. Photo by Tom Olin.A more fundamental factor has to do with ourselves. This is widely misunderstood, so bear with me. The popular belief is that protests arise when large numbers of individuals are fed up with the injustices of their lives. Actually, that rarely occurs. Rather, people rise up when they sense a whiff of hope. I learned that early on. My teacher was Eunice Fiorito, a fiery blind woman in New York City. When I went to Washington in the mid-1970s, my charge from the board of the American Coalition of Citizens with Disabilities (ACCD) was to make real the promise of section 504, the final sentence of the 1973 Rehabilitation Act. What we did was to communicate that potential, so that people with disabilities from coast to coast and border to border could understand it and relate it to their own lives. "Sign 504" buttons appeared everywhere. It was that growing sense of hope that led the ACCD board to authorize the 10-city sit-in that I proposed in early 1977 and to enable us to carry out that demonstration successfully.

A decade later, Justin Dart traveled to all 50 states to carry a similar message. The recently introduced bill, which was to become the 1990 Americans with Disabilities Act, promised to extend section 504 to the private sector in our country. Justin and others (I was privileged to work with him, as were thousands of others) communicated how the ADA, if enacted, would change the very communities in which people live, including hotels, restaurants, movie theatres, and banks. We talked about how title I of the Act would open up opportunities for employment. The message of hope resonated, so much so that more Americans with disabilities by an order of magnitude participated in ADA events than had taken part in the 504 demonstrations.

This idea was succinctly stated to Martin Luther King, Jr. by one of his aides: "People think revolutions begin with injustices. They don't. A revolution begins with hope." The "Happy Warrior," Minnesota senator, vice president, and 1968 presidential candidate Hubert H. Humphrey, said much the same thing: "History teaches us that the great revolutions aren't started by people who are utterly down and out, without hope and vision. They take place when people begin to live a little better – and when they see how much yet remains to be achieved."

The Climate in Washington

Another reason people become active is that they sense that change is possible. In the late 1970s, we as a nation not only thought that positive change in Washington was possible, we actually expected it. This was the post-Watergate era. The need to reform politics in the nation's capital was so widely recognized that it was a central theme for Carter's presidency.

I don't anticipate much, if any, substantive progress in Washington, DC, the rest of this year, nor in 2006. The partisan bickering is as bad as I have seen it, and I've been observing for 30+ years. The midterm elections, when all 435 Members of Congress and one-third of the 100 Senators face the voters, are now less than a year away. My sense of it is that people on Capitol Hill are less interested in substantive policymaking than they are in political posturing. Elected officials are doing things, and making statements, with an eye toward using them in fund raising and in attracting votes.

The recent off-year elections, particularly in Virginia and New Jersey, have emboldened moderates in both parties. Until this month, they've been shunted aside by more radical members at the far right and far left of the political spectrum. Now, after years of frustration, the moderates are speaking up. Meanwhile, the same outcomes are electrifying conservatives and liberals alike. There is a lot more fear, and a lot more anticipation, about November 7, 2006, than there was just a few weeks ago. All of this is destabilizing for anyone hoping to get something meaningful accomplished in Washington over the next twelve months.

It doesn't mean that we should not try. I am working on some language about telecommunications, and other advocates are working quietly in Washington as well. It does mean treading cautiously. There are things on our agenda that we have to "shelve" for now. That is why, when people ask me why this or that matter is not being pushed aggressively in Washington, I often have to ask them to be patient.

Young Turks

The term "young Turks" traces back to the beginning of the 20th century, when students, soldiers and others "went underground" in what is now Turkey, and then was the Ottoman Empire, to sow the seeds of revolution. It is loosely used these days to refer to youth who want to change things.

What about young leaders in our midst? The 1970s movement was begun by people still in their 20's, with only a few intheir 30's. Some Ragged Edge readers looked around and wondered – "Where are the Young Turks of today?" Again, it's a reasonable question. The fact is, though, that there are more young leaders out there than most of us know. The American Association of People with Disabilities sponsors an annual award for emerging leaders, the Paul G. Hearne Award. The AAPD president and CEO, Andy Imparato, is not yet 40. Kathy Martinez, the new leader at WID, World Institute on Disability, is not yet 50.

It helps to remember (smile) that the aging leaders of yesteryear once were Young Turks, too. Ed Roberts and Fred Fay were college students in California and Illinois when they started the first independent living programs in the nation. Virtually no one had ever heard of either at the time. I know first-hand that there are a lot of young Ed's and Fred's, not to mention Nadina's and Eunice's out there. We may not know their names today. Someday, we will.

The Light at the End of the Tunnel

The only constant in life, it's said, is change. Already we can sense it. The country is hunkering now for a change in direction. The humongous federal deficits have people scared, as do high home-heating costs and gas prices. Seniors are confused over Medicare. There is growing consensus that Iraq is turning into another Vietnam. All of this may come to a head on November 7. If so, it's quite possible that the climate in the country, and in Washington, DC, will become much more accommodating to domestic issues. And, as I pointed out in the earlier piece for Ragged Edge, our issues are bubbling to the surface. Already, just this week alone, I've received e-mails from the Hill telling me that this Committee Chairman or that one is suddenly very interested in hearing aids (Why do they cost so much? Why won't most insurance policies cover them?), employment (What can we do to boost jobs for Americans with disabilities?), and the Internet (Why are most Web pages inaccessible to blind persons who use screen readers?).

Stirring Things Up

In 1971, while I was still in graduate school, a Chicago-based activist named Saul Alinsky wrote a short book, called Rules for Radicals: A Pragmatic Primer for Realistic Radicals. I did not know it at the time. But six years later, when we were beginning to plan the 504 protests, I was wondering aloud how to get people with disabilities to rise up. One of the ACCD board members handed me a copy, saying "You'll have to ask God." I am sure I looked confused. "Alinksy is the God of the oppressed," he went on. "I think you'll get some ideas from him."

I did – and any of you readers hoping to stir things up will, too. The book is still in print. You can get a copy for $9, or a used one for as less. In my opinion, it's the best $9 investment an advocate can make. Whether you are a Young Turk or not, Alinksy has much to teach you. It was this book that convinced me in 1977 that a sit-in would work. Alinksy taught me to stay within the experience of our people. While going outside the experience of the other side. Having hundreds of people with all kinds of disabilities in their offices was foreign to virtually every federal employee in Washington, New York, San Franciso, and Denver.

Here's another good guide: Getting to Yes. This is an oustanding primer on how to reach compromises that let everyone walk away satisfied. It's $10.

You can have either, or both, in your hands within a week. Just go to Amazon, Barnes and Noble Online, or any other Web-based bookseller. You can save money, too, by purchasing used instead of new books.

Let me end with a suggestion for using your savings. Send a check to the Disability Activist Legal Defense and Education Fund. It's designed to help ADAPT activists who get arrested for standing up for our rights. Send the check to: ADAPT, 1339 Lamar Square Drive #101, Austin, TX 78704.

Frank Bowe, often called "The Father of Section 504" and "An Advocate's Advocate," has a 40-year history of activism. He led the 1977 nationwide protest that gave us section 504, worked with Justin Dart and others on ADA, and helped to make TV captioning available everywhere. A professor at Long Island's Hofstra University, his newest book is Making Inclusion Work (Prentice Hall, 2005).


The leaders of yesterday must be secure enough to allow the leaders of today to lead. The next generation may be able to carry the torch farther towards our dream. This is not an insult to our former leaders, but a tribute and our duty. Let our work once again be born from hope and not from fear.

Finally! I have been waiting forever to hear about lessons learned from older advocates! Thanks!
When it comes to the question of younger advocates, are we here? Yes.
Are we disconnected? Yes.
I can not count the number of discussions I have had with other young people about the direction of the movement, what we are observing, and where we fit in. I have yet to convince an older advocate to have the same real discussion, so I’m putting it out there, here and now.

There are many young people [under 30, 20, 15yrs old] that believe solidly in changing the system, working with in the political arena to create change. I admire their patience and work, and appreciate the opportunities that are there [conferences, internships] for them to learn. Yet, for those of us who are under 30, 20, 15yrs old, who are more moved to create change on a grassroots, people level, we are left with little in direction from the advocates who’ve led the way. In the discussions I’ve had with other youth we all agree protests are not as effective as they once were. It’s been done. It’s accepted as normal by the hippy generation who now run the country, work in factories, or McDonalds. What do we do to get attention now? How do we draw our community together now?

We have begun to find our own way. We have latched on to building community. Disability culture and history are now our tools to create community and change. We’ve found that for some reason saying “I am disabled and proud. I have community and culture” seems to be taken as a radical statement. Like most youth we may not know why it works, but we understand discomfort when we see it.
I’m 26 and have been involved in disability rights since I was 18. I’ve seem my generation become more divided, some of us go to college, some are not allowed to. We have 20 something advocates who read books about our community/culture/identity and we have those who are stranded in the system with no access to the idea of disability pride, or those who choose to still try and fit in, the “differently-abled” crowd. We are desperate to cross these gaps, to reach all with this idea of community and pride. But we need help. We need ideas to move it further, ideas to create change in public support.
Should we have to find our own way? Maybe. But if I have to go to one more conference where we lay down at the feet of those with power and beg, I may just lose what’s left of my spirit to create community in pride.
Can we please have a conference/listservs/forums/conference calls for grassroots, people level, activists/advocates? Can we hear more about these lessons learned? Can older advocates listen to us –even though what we say may be old, disheartening or even complaints about what they worked so hard to put into place? Can we have brainstorms for new ways to get attention? To create change?

It occurs to me that the 'disAbility field'- whatever that really means, is in a new era. We have more ways to impact public policy than ever before-whether that be through the media, access to legislators, or even just the basic mechanical process of turning thoughts into communication.

What I do not see enough of is good, solid, coordinated tactics. This, among other things, means that rallies and marches are an advocacy tool- but only one tool of many that advocates should be using.

This also means that saying (this is a paraphrase) "I have a disability and I deserve XYZ"- (I’ll call this the social justice argument) - however right it may be, is not enough to change public policy. Remember that as of today, we will be competing against the claims of Katrina, Iraq, the worry that Social Security will go away, etc…

We need to understand that the social justice argument, while a valid component of any advocacy strategy, is just that- a component. Try to keep in mind that the only people the social justice argument resonates with are the people that already agree with you. We have to be better advocates, we have to use more of our ‘advocacy tool belt’!

It absolutely stuns me the number of times I read articles, see interviews, etc... where the valid and important arguments-other than the social justice-are ignored! People are ignoring the arguments that resonate with the people who disagree with us!

Another way to look at this is how people make arguments to people in power based on their priorities and not, in any way, framing their point in a way that resonates with the person in power. Below are two examples of how basic issues to pwd can be reframed to have a stronger impact with those in power.

Why should employers hire people with disAbilities? First, nothing says hire unqualified pwds. But above and beyond that, we are the largest minority in the country and one of the few that anyone can join at any second. Can any employer honestly say that they are hiring the best possible employees if they don't do everything they can to access the largest and mostly untapped pool in the country?

Housing- Why should people with disAbilities have access to affordable and accessible housing? Because without it our group, by definition, will be exposed to conditions that are likely to exasperate existing (once again, by definition of our group) conditions. These exasperated conditions are likely to require medical care. Keep in mind we're talking about people who need housing- and therefore are likely low income. Who do we think ends up paying for the medical care- the taxpayers! Isn't a housing voucher (or other examples) much cheaper than medical care and/or hospital stays?

I could go on and on. I firmly believe there are more arguments for each of our issues than the standard "social justice" (I am a pwd and I need/deserve this) one. Don't get me wrong- social justice is a fine point to make and should be part of the discussion. My point is that, especially in today’s world, ‘social justice’ cannot be the only –or I’d even say primary- point we make or advocacy tool we use.

The best comments I read where not from Frank Bowe but from Naomi Ortiz. It was wonderful to hear the viewpoint of someone not only under 30 but under 50 as well.
There is a lesson to be learned from past protests and such other things, and that is: When goals are accomplished and passions cool, what do you do next ? Most would say: "Set new goals and rekindle the cooling embers of passion." Others would say: "No, we have changed things and it's over, time we got back to living life again." It's these latter folk that win out.
We have the Rehabilitation Act of 1973 and we have the Americans with Disabilities Act of 1990 but neither has liberated us from the social stigma of having a Disability. Why ? Because in the past we have sought political and social change instead of seeking cultural change .If we can't change the "cultural-mind set" then no law will liberate us.
If the "medium is the message", then we need to be involved with that media so that we can get our message out.
We should be working for greater access to today's media....the World Wide Web and equal access to Web Pages. We have the tool for change in our hands we just need to use it more effectively.

On some level it matters not when the shift back toward domestic issues comes, if the local levels have not spent time growing, nurturing and empowering young activists, we will be unprepared for show how best practices for people with disabilities are best practices for everyone. Too many of our IL centers function in that place of status quo, seeing their responsibility as nothing more than helping people with disabilities "cope" with or "overcome" their disabilities. Running recreation and social programs, avoiding the work that occurrs in the difficult place of disagreement. IL Centers should be the fertile ground where young advocates get their training and education. Places where they are respected for taking that significant social and emotional risk to speak the truth to power. Regardless that the nation as a whole is focused on foriegn affairs and safety, the arguments and discussions about the wisdom of supporting people with disabilities into the workforce and into affordable safe housing, and into community must be taking place at a LOCAL level, otherwise, as those local leaders move their way up that political ladder, they will arrive in Washington without ever having heard or come to understand the argument and without ever having addressed it in their home communities. I don't know how it can happen, but NCIL has to create more support for local IL's to show that their funding ensured testimony at local Housing authority meetings, city councils, county commissions, school boards etc. and tht staff time went to ensuring that our understanding is committed to paper, read aloud in public forums and argued in administrative hearings so that it continues to create significant policy change that can eventually inform policy at the national level, because experience will show it works at the local level.

First, something about me and where I'm coming from: It was close to six years ago that my age-related macular degeneration went neovascular in the second eye and left me legally blind. It was 2-1/2 years that I first became an active, on-the-ground volunteer for a political campaign. I'm sure no one will be surprised this was Howard Dean's. After the Dean campaign ended, I began volunteering for Christine Cegelis in Illinois' 6th Congressional district -- the only candidate or officeholder of any stripe to actually march in the first Disability Pride Parade. I have continued to volunteer for Christine as she runs for what will be an open seat in 2006 and have also now joined the planning committee for next year's Disability Pride Parade. (I understand that next year may see Parades in places other than Chicago. Good news!)

Even though I came late to active involvement, I have always felt that the best way to get what you want is to elect representatives who favor the positions you want to see adopted. Letter-writing and protests and in-office lobbying are important, but all are that much more effective with people who are already favorably inclined. And if it's someone who knows you helped get them elected, so much the better.

That's why I was so disappointed to see so few disabled people involved in the process of getting candidates elected. or seemed to. Am I missing something? Because if I'm not, then I think the disability rights community is missing something.

We can be our own worst enemy. I am (25-35) and have been discriminated against by my own (disabled) people. There was a time when advocates were able to attach their name to their efforts - Ed Roberts, Justin Dart, etc. - but our generation advocates under pseudonyms, keeps our heads down and worries about what we ask for.

We are discriminated against our peers who will sell us out for their own survival. They are only doing what it takes to survive.

I have taken time to understand our rights, our history, our culture. I have taken time to understand capitalism, democracy, the history of our country. To engage in our fight, we should know the differences between rights and desires. We should know how to speak in economic terms - we can be expensive people.

I would love a forum to build a community. I appreciate this dialogue. I think we have already begun to bridge a generational issue.

Count me another person on the side of Naomi Ortiz. She eloquently described the position from which I come in advocating for equal access for myself and others. Don't hire me merely because of my disability. Do it because I am a qualified candidate who can do the job, as the terminology of the ADA reads, "qualified applicant with a disability."

My advocacy is of a quieter, albeit different, nature these days. I was abused growing up at the hands of my mother and stepfather. The abuse left lasting scars on my psyche and my body. I have been quite vocal in working to end the maltreatment of children, in advocating that the survivors get appropriate treatment in the healing of their wounds from childhood.

When others question the apparent lack of energy or resolve of today's people with disabilities, I wonder why they fail to see the work that's actually being done.

Good news! On Nov. 19, here in Maine, an organization whose mission is working to end poverty held a "Daring to Learn and Lead Together" conference. Of the over 90 attendees, a significant percentage were people with declared disabilities. We were a force in presenting, we were a force in attending, and we plan and hope to be a force in leading! There are a number of learning opportunities around organizing, advocating, leadership, etc coming soon again here in Maine. If you need information I'll send you what I know of if you write.
If you need courage, join us!
If you feel hopeless, hear this! There is a current bill in the hopper at our State House to address employment for people with disabilities. You can come forward to work on it!
For more information you can write to mainefun40@hotmail.com or join the E-mail list at www.abilitymaine.org
There is hope and it is the shining light at the end of the tunnel!
Steve Hoad

After reading much of the articles from responding disabled I see that the only way that we will we will be equal is when we have "National Health" !! Employers will employ not fearing their insuance rates going up. Perhaps with National Health we can get rid of Workmen's Comp which only fosters the distrust.I'm CP and now 58 and now have some health problems that may not let me see a truly productive disabled community. The young disabled must hold on and fight for everyone's rights.

You are most certainly right. There are many of us who have been able to develop skills and capabilities to drive the Disability Rights Movement forward. We stand on the Shoulders of Giants and have more responsability now than we ever have.

As a former youth advisor for the National Council on Disability and now non-profit director for disability media production company in Berkeley, I stand in solidarity with you in the fight.

Warm Regards,
Victor Pineda
President Disability Media Center

Is there anybody out there? Denials of Paratransit for individuals with severe disabilities are running rampant in Las Vegas, Nevada. Crossings here are extremely difficult, even for aaable-bodied people. Many pedestrians are hit and killed in croswalks. I use a motorized wheelchair and was struck in the crosswalk just a few months ago by a truck. Paratransit can make the difference between life and death for disabled people here, especially in 117 degree weather in the summer.

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