ADA Twenty Years from Now
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July 2010 Newsletter Main Page
ADA Twenty Years From Now
As we celebrate the twentieth anniversary of the signing of the ADA, we thought we’d ask individuals who were adults at the time of the signing and are still involved with disability issues to look ahead twenty years and share with us their vision of the future.
“When it comes to the future, there are three kinds of people: those who let it happen, those who make it happen, and those who wonder what happened.”
-- John M. Richardson, Jr.
The process was simple enough. NW ADA Center sent questions to a number of individuals, most of whom had connections to this region of the country, asking for their thoughts about how things might change for people with disabilities over the next twenty years. We asked for their personal opinions, which of course do not represent the policy of the organizations for which they work.
Several themes emerged. We need to create livable cities that allow individuals to have access to necessary services. Perhaps it seems like only an urban problem, but one of our respondents quoted a taxi driver in Fairbanks whose mother was struggling with access. Several respondents felt that employment was a key issue whose resolution was as much a systems problem as it was attitudinal. Some felt that technology would level the playing field in employment and in creating social networks. Political influence was likely to increase as politicians realized the vast number of voters who have a disability.
The responses were striking in two aspects. First, only one person mentioned the thousands of veterans who are returning from Iraq and Afghanistan with disabilities. Given the significant affect the Vietnam vets had on the disability world, and how their influence contributed to the civil rights movement from which the ADA grew, the paucity of comments about their role in our collective future seemed like a significant oversight. Second, the mostly hopeful comments seemed to reflect a vision for a future of incremental changes, broadly focused, rather than a common agenda that focused on civil rights as was the case twenty years ago.
Nevertheless, a number of provocative ideas surfaced: perhaps it is time to rethink whether we still want the distinction of “being disabled”, perhaps it is time to integrate the armed services, perhaps time to develop a Project Civic Access-like approach for Title III (businesses), and many thought it was about time to watch the baby boomers become advocates.
Rich Sanders, working with the Governor’s Committee on Disabilities in Alaska, summed up where we are today the best. “We are,” he writes, “in a transition period from a society (Post World War II to 2000) that put individuals with the highest athletic, intellectual and cosmetic attributes at the ‘top of the heap’ to one that places more value on individual motivation, talents, innovation and ‘ability to get things done!’
“In this scenario, it opens doors for individuals of all types. There will always be many that value the old set based on their upbringing and what the mainstream media keeps making money on (physical attributes) but as more and more individuals with the entire gamut of physical and mental attributes succeed and continue to infuse the mainstream jobs, media, etc., and greater understanding of disabilities through continued education (we can never stop teaching), the ‘distances’ will be reduced and in many cases eliminated.”
Participant comments appear with the questions they sought to answer, and are edited for length but hopefully not intent. The individual’s affiliation and location accompany the first time they are quoted.
What will people with disabilities be able to do in 20 years that they can’t do now? Will they think about themselves differently?
Rich Sanders, Program Coordinator for the Governor’s Council on Disability & Special Education in Anchorage, offered a provocative question: must individuals with disabilities continue 20 years from now to press for the distinction of being “disabled”? He writes, “It is my hope that someday, the word “disability” will not be used to describe anyone in any way. Unfortunately, the very language that helped people with disabilities achieve so much in terms of legislation, access, opportunity and technology is the same language that keeps them set apart from the general population. For instance, why does there have to be a Vocational Rehabilitation program that only serves people “with disabilities.” I believe every living person will need “vocational rehabilitation” of some form in their lives. We just need to ensure that employment and training systems that are developed in such a way as to allow full access to all people.”
Kelly Buckland, Executive Director of the National Council of Independent Living, Washington, DC kept his vision simple and direct. He says, “I hope they can board an airplane without surrendering their wheelchair. Work. Have a family without fear of losing their children.” We’ll return to Kelly’s thoughts about families later.
Brian T. McMahon, Professor, Virginia Commonwealth University, Richmond, VA, wants to see the military integrated. He writes, “I believe that by 2030 we will have conclusively demonstrated the valuable contributions of Americans with disabilities as safe and productive workers…..so much so that they will be the final group of citizens to be allowed to “serve openly” in the active U.S. military, with accommodations as required. This will provide yet one more avenue away from poverty and toward full inclusion in the benefits and privileges and responsibilities of full citizenship.”
Brent Herrmann, CEO, Epilepsy Foundation Northwest, Seattle, sees technological advances offering a degree of freedom for many individuals with disabilities that will open opportunities across their lives. He writes, “I think advancements in technology will make it easier for people with disabilities to communicate more effectively with their health care providers, family and friends, employers and so on. Advancements in technology will make it easier for people with disabilities to move around in society where limitations may have been in the past. A company in Seattle, for example, is developing a pager-like device to be worn on a belt or somewhere on person that will predict when a person is about have a seizure so that they can pull their car over to the side of the road, or sit down on a park bench, or move to a safe place.”
Lynnae Ruttledge, Commissioner of the Rehabilitation Services Administration, Washington, DC, suggests that “The workforce in 2020 finally reflects the talents, skills, abilities and creativity of individuals with disabilities serving in key roles at every level in public, private and non-profit businesses: including entry, paraprofessional, technical and professional positions. Individuals with disabilities are recognized for making substantial contributions as workers, managers, supervisors and leaders. We are members and leaders in labor unions, in management roles and on boards of directors. We continue to strengthen America's competitiveness in the global economy.”
Ray Petty, Region VII DBTAC – Kansas Coordinator, Lawrence, KS, writes, “For many individuals there isn’t much that can’t be done now. For others, it seems, there will always be a struggle. The best outcome I can imagine is one where People with Disabilities collectively and individually strive to improve themselves and their environments so that opportunities that weren’t imaginable 20 years previously continue to become realities in the future. To borrow from the Grateful Dead: “Lately it occurs to me: What a long, strange trip it's been.” I suspect this trip will continue for years to come."
Some say that the fight to create the ADA a quarter century ago brought people with disabilities together, but now they tend to go their separate ways. Do you agree? What’s ahead for the disability movement?
Jim Beck, Executive Director, Access Alaska, Anchorage, remembered the long fought struggle that resulted in the passage of the ADA, and wondered what forces might bring people together. He was the only person to mention veterans.
“I still think,” Jim says, “of the passage of the ADA as part of the Civil Rights Movement that started in the 60’s with the passage of the Architectural Barriers Act in 1968, the Rehab Act in ’73, and the years long fight to get the ADA passed (remember that it didn’t pass in 1988?). In many ways it was a 25-year long movement that resulted in the ADA. We still have some strong pockets like ADAPT.” He pauses, “Will something create another issue that will bring people together? The vets from Iraq and Afghanistan may push the disability community in their own directions.”
Kelly Buckland’s perspective is that, “there has always been a split going on, and it’s getting worse. Groups have a focus only on their disability, feeling that their situation warrants more attention. We miss Justin Dart, who brought people together to get the passage of the ADA.
“The ADA was so important that people put aside their turf issues . . . and its common issues that bring people together. Perhaps in the future it will be transportation or parental rights that will have the power to draw people together again.”
Windy Melgaard, Disability Program Navigator, Idaho Falls, offers the analogy of other minority groups in America and their adsorption into society’s mainstream. She writes, “At one time woman, people of color and others where all viewed as unequal…. Look at society today, most people are now accepted and able to work, have political views that are respected and are no longer told where they can go. . . . People with disabilities need to be able to work, be in public places with accessible sidewalks, parking lots and public buildings. They will need to stand up and be heard as well. You are right, they are not as joined together as they once were. I hope they can come together and get their “voice” back.”
Brent Herrmann suggests that there is a changing of the guard, with the old retiring and the young beginning to take their up role as advocates. “With any good social advancement, some of those in the “fight” may now need a break. So, there does need to be a new generation that comes forward to advocate for causes and movements that are now more current than the past.”
Ray Petty, Region VII DBTAC – Kansas Coordinator, Lawrence, KS didn’t agree at all with the assumption of splintering. “I see so many more connections and mutual understanding,” Petty writes, “between People with Disabilities now than existed 20 and 30 years ago that I fail to see how such an observation holds much credence. There is always a need to (if I may borrow a Sarah Palin term) “reload” -- with young advocates replacing those who want to retire, so to speak. I hope that the range of issues tackled by independent living centers and other advocacy entities continues to expand beyond basic necessities like cash benefits, housing, and transportation to include education, employment, and ENJOYMENT! "
Rich Sanders offered a new perspective. "That’s an interesting concept and one that I had not considered. I do believe that there will always be a need for a strong representation but I also know of some of the “splintering” amongst disability groups (i.e., blind, visually impaired, deaf, mobility, etc.) because sometimes their goals aren’t always congruent. I would like to see more of a focus on the ‘human movement” as opposed to the “disability movement” because the latter tends to perpetuate the notion that people with disabilities are separated from the general population and are somehow not “whole” or have no chance of achieving things that a person that the majority does not consider having a disability would.”
Will we see more people with disabilities in politics in the next two decades? Will politicians work harder to earn the vote of people with disabilities?
Our respondents were split on whether changes will be significant or incremental, but there was an agreement that the political influence of people with disabilities would likely grow over the next twenty years.
“You’ll see both,” says Kelly Buckland, “more politicians with obvious disabilities and politicians seeking the vote of people with disabilities – as a result of aging baby boomers and the medical advances that have allowed babies to survive and the elderly to function. The increase in the number of people who have a disability will result in gaining more political capital and influence.
"I ran for the Idaho state Senate in ’92 and ’94. Did the fact that I have a disability matter? Absolutely! People looked at me differently. I’d like to think that is had as much of a positive influence as a negative. A lot of the public had known me as a disability advocate, so naturally they assumed I could only be smart in disability issues. Going door to door was tough."
Jim Beck is more cautious. “I would think so. Look at the politicians who have obvious disabilities. The influence of people with disabilities will grow, but it’s all a game of incrementalism,” he says. “There are lots of folks with disabilities but they are diverse on many issues except diversity issues. Don’t expect a block vote for one party and one candidate.”
“If we work harder at showing our vote counts the politicians will pay attention to us,” writes Bobby Ball, ADA Task Force, Boise. “In Idaho we have a collaborating group that consists of nearly every disability related organization and service providers. I believe our legislators know we matter because of the work of the Consortium of Idahoans with Disabilities.”
Rich Sanders believes that the number of voters with disabilities will have its effect. “I certainly believe that over time, we will see more people with visible and “hidden” disabilities involved in politics as awareness and understanding of disabilities grows in society and that when politicians see the percentage of voters with disabilities and data that reflects they are voting, they will respond accordingly. Data drives action and funding in these times.”
“Although the pace of change often seems slow," writes Brent Herrimann, “people with disabilities are making gains in rights and representation. It will take the continued hard work of people with disabilities and related organizations to keep politicians working harder to earn our vote, however.”
Not all of the respondents agreed with the assumption that the community of people with disabilities would gain political influence over the next twenty years. Ray Petty offered this observation: “I seriously doubt [that we’ll see more influence]. The monied interests that control national politics aren’t likely to back candidates with civil rights agendas. Of course, not all People with Disabilities are part of the Disability Rights and Independent Living Movement(s). With an aging population it may be that we see more people with invisible disabilities in politics, but they will most likely have been able-bodied throughout most of their lives. And so it goes! However, local politics may be the place where progress can be made. Remember what House Speaker Tip O’Neill said: “All politics is local!”
High unemployment for people with disabilities has not changed much in the last 20 years. What needs to change for it to improve in the next 20? Do you think it will change?
“I’m worried it is not going to change.” says Jim Beck. “We’re working on the wrong end of the problem. Civil Rights are not the only place. We still have a segregated educational system – kids graduate without hope and they’re not yet a part of the fabric of their community. We have a terrible job of getting expectations set for employment. Here in Anchorage we have worked on that by arranging for peer support from adults with disabilities and from one another and actual paid employment for students.
“We’re missing the boat, look also at the Social Security system and health care. Both are almost a disincentive system for people with disabilities; they are not employment friendly. So people stay unemployed. To be progressive we need to create a social insurance system to help make a conceptual change.
“This is one of the key issues we need to solve.”
Kelly Buckland agrees, noting that “Very fundamental things need to change. We pay people not to work, but we should provide the supports they need to work. I’ve heard that if we continued to pay benefits like Social Security even after someone became employed that it would cost less that the system we have now since working people pay taxes. Currently very few people leave the Social Security system once they begin receiving benefits. People are forced now to prove that they are unable to work, and to get expert medical confirmation. Society needs to recognize the talents of people and what they can contribute.”
Andrea Olson, advocate, Portland, writes, “Attitudes, not disabilities, are still the major barrier to employment. Managers/supervisors are still uneducated when it comes to understanding the dynamics for working with people with disabilities. There is almost a complex cultural issue involved. Just as a manager/supervisor may need to be flexible when working with an individual from a different culture, a similar degree of flexibility should be considered when working with a person with a disability. All of the hiring initiatives for hiring PWD will flop if a bunch of managers/supervisors don’t have basic awareness about PWD.
“Over time, the baby boomers developing disabilities will impact society’s view of people with disabilities . . . . Baby boomers will more likely request reasonable accommodations to stay on the job as long as possible and will also demand a society that is more inclusive. Since baby boomers are known to be an outspoken group, it will be interesting to see how things change when they run into the societal barriers that people with disabilities have been facing for years. For example, over the next 20 years, I envision a longer time allowance for people to cross a street.
“In the short term, however, those people with disabilities who have grown up with disabilities will continue to struggle with high unemployment. The 70% underemployment/unemployment rate for people with disabilities is alarming. Given that information, one may determine that the majority of folks in society have low expectations for career ambitions of those people with disabilities. For people with disabilities, they need to have the ability to see beyond the societal “norm” and to figure out a strategy for being a part of the 30% statistic. I know that in my 45 years living with a disability, I have had to figure out how to present myself as a qualified and desirable employee, and in a way, accommodate society. It has been my responsibility to put people without disabilities at ease.”
Rich Sanders and Brent Herrmann look at technology as part of the answer to changing the unacceptably high level of unemployment. Rich Sanders writes, ”One of the biggest changes that has happened is the age of computers and data technology. We didn’t even use cell phones for data transfer until just very recently and products like the portable and powerful IPAD weren’t around. People that needed to go into offices to do their work no longer need to. That being said, we don’t want to see people limited to working at home as there is incredible value in the human interactive experience in the same physical setting. Which brings to the table the focus on transportation of all individuals to be one of my top three priorities.
“Technologies that allow people with disabilities that had significant barriers to handling of information (the top employment need) will now be able to compete with those that do not consider themselves as having a disability. The real key is ensuring that the technology developers have people with significant communication, mobility and sensory disabilities in mind when they make their products. This in turn will allow companies to integrate people with disabilities much easier. Much needs to be done on education and policy around technology development to ensure a level playing field. I think this will happen.”
Brent Herrmann adds,”An increase in new technologies that allows people with disabilities to experience a level playing field with others who don’t have disabilities will be critical. As attitudes change and opportunities are made available, a supportive physical work environment is equal to ensuring stability. Increasing communication abilities and funding for telecommuting jobs to support in-home work programs that may be more suitable for some living with disabilities will only help some be viewed as productive employees that may have not in the past.
“The future will only present expansion of social networking opportunities for people with disabilities that will help alleviate feeling disconnected. Group interaction capabilities are now available via the web where before were only available at a physical location. The opportunity for people to connect via the web and then possibly in person can make the process easier and less threatening for people with disabilities.”
How do you think cities will change in the next twenty years for people with disabilities? What will stay the same?
Jim Beck feels strongly about their future. “Cities really need to change, some drastically. I think long term care needs might drive cities to make those changes, as citizens age and continue to expect a good quality of life. People end up needing to live close to medical services, grocery stores, and so on. They need small, walkable neighborhoods – and expecting that in 20 years is optimistic.
“ In Anchorage and Fairbanks the growth has spread the city all over the area; I talked to a cab driver in Fairbanks and his mother cannot live independently there anymore because she can no longer get to the doctor, the grocery and drug stores, and so forth, on her own. Cities need redesigning. . . . Roles need to change to a more integrated approach to create affordable and humane neighborhoods. At the same time, we don’t want to see little fake villages owned by large extended care corporations.
“ Change relates to the question about government’s role in disability issues. Perhaps there should be a focus on the regulation of growth.”
Kelly Buckland agrees. “We need livable communities. But in 20 years? I’m not so sure about that. Housing is the issue – affordable, accessible housing. Moving to DC, it was terribly hard to find a place to live [Kelly uses a wheelchair]. Most of the homes were built years ago and weren’t accessible. And I saw the same thing happening in Boise in recent years; creating “density” meant building up. We approached builders and public officials to encourage one story homes with entryways that had no stairs. They had a hard time conceiving of the idea. It’s a frame of mind, universal design.”
Bobby Ball sees change coming through the application of codes like the IBC. “Building codes are the way to make access change. If your state uses the latest in building codes and if there is a way to make changes to that code you can get 100% (or more) of new construction complying with at least the minimum requirements. In Idaho we have a State Building Code Board who can amend code so if there is something you want to add to your code you can, such as opening force of an exterior door.
“What will stay the same is if cities don’t understand they need an ADA Coordinator, to perform self-evaluations, to make sure their programs and services are accessible, and review their transition plans to make sure facilities are accessible, including curb cuts.”
Rich Sanders thinks the Boomers will push accessibility in the cities. He writes, “Every year I see more and more city services, facilities and technologies designed to be more ‘user friendly’ to the general population and in turn, people with disabilities. This year I’ve seen the old street crossing signals go from a flashing walker to one with seconds that count down as well. Though the probable design was to reduce red light running, it also provides a wonderful planning mechanism for people with mobility disabilities that cross the street.
"As the population ages with baby boomers, we may see some of the most significant changes in history simply because the representatives in Washington and in government will either have disabilities or be around more people with age-related disabilities, which in turn will have an impact on the way they develop and shape policies and programs. In terms of what will stay the same, I think that fiscal conservatism will continue yet this philosophy should never be used as a basis not to fund accessibility simply because it would save money. Laws need to be strengthened to ensure this does not occur.”
Brent Herrmann looked at improvements for citizens as existing programs are extended and people with disabilities “folded in”. He writes, “It’s hard to tell right now given the nature of our economy and the cutback in service-related programs. The need for providing programs and services to the disability community will always be available through local, state and federal government programs. The extent to which they will be made available is certainly up for debate. A future of streamlining how programs and services are offered seems to be a topic of conversation. For example, increased tele-health medicine programs especially for states with large rural areas are being seen today. It may be that additional programs and services such as those for people with disabilities get folded into this type of system that may bring more services to people with disabilities especially those in rural areas.”
Ray Petty sees the ADA continuing to impact local government. “I think the ADA has had its greatest impact on state and local governments (Title II entities). Reviews of progress - or lack of it - by enforcement agencies should continue to the point where even the smallest municipalities will be expected to review their facilities, programs and policies and revamp them where discriminatory barriers exist.
“There won’t be an ‘ADA Army’ other than the hopefully expanding network of people within and without government who understand that business as usual doesn’t serve all citizens fairly. A continuing effort to enhance public awareness and educate decision-makers will be needed.”
If you could magically create a new law that would benefit people with disabilities in the future, what would it be? Also, do you see the financial and regulatory roles of local, state, and/or federal government changing in 20 years? In what way?
Kelly Buckland has a specific suggestion that he’s planning to pursue. “I’ll work at the national level to create laws protecting parents with disabilities. They should not have to worry about losing their children, especially in the case of a divorce and custody hearings that focus on the issue of disability.”
Ray Petty has a novel suggestion: “At some point, you realize that new laws aren’t necessarily needed. If all our governments were complying the way those in the Project Civic Access program at DOJ are ostensibly compelled to do, the USA would be much more accessible and disability-friendly. I suspect businesses are less likely than governments to have paid attention to the ADA, so a parallel initiative to review and compel compliance under Title III might be in order.”
Rich Sanders writes, “Early intervention services available for everyone from birth to age 5. Secondly, change Vocational Rehabilitation and other employment systems to reward counselors and staff for services that help people KEEP jobs as opposed to services centered only around GETTING jobs.”
Brent Herrmann offers these suggestions. “That insurance companies cannot change funding of medications and pharmacies cannot change actual medication from brand to generic or generic to generic based on cost analysis but based only on doctor and patient approval.
“That federal funds be made available for schools to have full time school nurses on site during school. Given the lack of a full-time school nurse in each school, that administration of potentially life-saving medication, like Diastat, within the school setting be allowed by trained school professionals without possibility of recourse and with pre-planned permission of parents and physicians.”
Bobby Ball wants “Housing that is affordable and truly accessible; homes that are built with at least one level entrance and a bathroom that you can get in (and out). But mostly I wish I could write a law that removed myths and stereotypes. I want to be thought of as just another member of society, not ‘different’ or ‘handicapped’ or ‘disabled’. I’m a person first and am not defined by my disability.”
Well, that’s our look at the future. We’ll conclude with some parting comments by Rich Sanders. “The term “disabilities” needs to be less emphasized and more needs to be done to ensure that society meets the language of our forefathers…”We hold these truths to be self-evident, that all men (people) are created equal, that they are endowed by their Creator with certain unalienable rights, that among these are life, liberty and the pursuit of happiness.” They had it right then. All we need to do is teach every person on and coming into this earth that it still holds true today for everyone.”
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