While the US has historically led in disability rights, critical barriers remain.
|More than one billion people, or approximately 15 per cent of the world’s total population, live with some form of disability.
Often referred to as “the world’s largest minority”, persons with disabilities are accustomed to facing barriers to their participating in almost every aspect of society.
“In the case of disability, we’ve had to spend all our time and energy determining who is a member of the club, rather than if they are being discriminated against,” Joelle Brouner, Executive Director of the Washington State Rehabilitation Council told Al Jazeera.
Brouner, who experiences a major physical disability herself, works to see that a greater number of people with disabilities enter the workforce and progress in their careers.
But, like so many people with disabilities, sometimes just getting to work can pose as great a challenge. Smiling, she asked: “How do I figure out how to build a life when I have to figure out how to ride a bus?
“In 2004, I went to New York City and there were very few wheelchair accessible cabs, and I couldn’t use the subway. ‘We don’t want more of you in the world’ is the message some of this sends to people with disabilities.”
And that message can be quite prominent, such as when the US government failed to approve ratification of the UN Convention on the Rights of Persons with Disabilities on December 4.
On that day, “it [was] individuals with disabilities in the United States, including American veterans, as well as people with disabilities living in poverty and oppression abroad who look to the leadership of the United States, who truly lost”, said Curtis Decker, the executive director of the National Disability Rights Network.
The day before the US refused to ratify the UN convention was the UN’s International Day of Persons with Disabilities, a day set aside specifically to provide an opportunity to address the exclusion of persons with disabilities from jobs and communities by focusing on promoting accessibility.
This added both a degree of poignancy to the US vote, as well as an extra sting to the failure to ratify the convention.
“There are long held prejudices against people with disabilities that keep us from being full participants and equal contributors to our communities, and that prevent us from being as successful as we should and could be,” Duane French, division director of the state of Washington’s disability determination services department told Al Jazeera.
French believes that, at the root of all prejudice and discrimination against people with disabilities, one will find fear.
“People without disabilities fear that could be them [with a disability], and that fear elicits a visceral response,” French explained. “And from that emanates a sense of helplessness and powerlessness … they think: ‘Oh, if I were like that I couldn’t stand looking different, relying on someone else for help, I couldn’t stand being treated differently, or not being in control of my behaviours like people with psychiatric disabilities.’ What’s funny about that is it’s based on a premise of arrogance that somehow people without disabilities don’t look and act in ways that are outside of the norm, because plenty of folks without disabilities look and act outside the norm.”
Brouner agreed, and added another layer.
“There is so much discrimination against people with disabilities because I think it’s a natural part of being human to notice differences in other humans. And when people notice difference, one of the places they can go with it is fear. And if disability is seen as a diagnosis or a weakness, what is sexy about having a disability?”
French was blunt about how he summed this up.
“There is some arbitrary and mysterious barometer for the quality of life, and there’s a threshold, and if you drop below it you are seen as being better off dead. And somehow people with disabilities are viewed as being below that threshold where life is worthy.”
The way this plays out in society thus becomes obvious.
According to the US Department of Labour, only about 20 per cent of the country’s citizens with a physical or cognitive disability participate in the traditional workforce, and, of that group, 14 per cent are unemployed, a rate that historically has trended at roughly twice the nondisabled rate.
But that number grossly underestimates the extent of the problem, because it only counts those actively seeking employment, and not those who have given up hope of finding a job. Only 20.6 per cent of people with disabilities are in the workforce, compared with nearly 70 per cent of people without disabilities.
“There is an infantilisation of people with disabilities,” Brouner said. “Being treated like you’re a permanent child, with childlike expectations of what your life is going to be like.”
Disability Rights experts and advocates such as Brouner and French believe many people translate the difference of people with disabilities into a belief that they are less-capable than – or generally inferior to – those without disabilities.
“America has always had this romantic notion about individualism, where independence literally means doing something by yourself, for yourself,” Brouner pointed out. “But my experience with my disability is that independence can mean different things to different people, and even the most rugged cowboy who flips on his light switch in the morning, he didn’t string those electrical wires.”
In addition, many disability rights advocates believe being treated equally is also a political issue.
“Disability has now become a huge political issue with high stakes for the medical industry and an aging population,” Don Brandon, who was the Americans’ with Disabilities Act (ADA) coordinator for Alaska, told Al Jazeera. “In most other countries it is still a health issue, but here in the US it is political and health related.”
Brandon pointed out that half of Americans over the age of 65 have a disability. “But they just call it aging,” he said.
Brandon, who also founded the gruelling Midnight Sun wheelchair marathon in Alaska, believes the biggest obstacle facing people with disabilities is the attitude of others.
“Attitude regarding disability is still the number one barrier for people with disabilities. Architectural barriers will be the second major hurdle to be addressed, then transportation and affordable accessible housing and health care,” he said.
Barriers people with disabilities must face can take a variety of forms, including those relating to the physical environment or to information and communications technology, or those resulting from legislation or policy, or from societal attitudes or discrimination.
The end result of all of these is that persons with disabilities lack equal access to society, services, education, employment, health care, transportation, political participation, and most of all, justice and human rights.
However, when these barriers are removed, people with disabilities are clearly able to make more than their share of contributions to society.
A study of its distribution centres by the American Society of Safety Engineers found that workers with disabilities had a turnover rate at least 48 per cent lower than that of the nondisabled population.
Their medical costs were also 67 per cent lower and time-off expenses 73 per cent lower.
Furthermore, a 2005 study published in the Journal of Vocational Rehabilitation found that 92 per cent of US respondents view companies that hire people with disabilities more favourably than those that do not.
Nevertheless, problems persist.
“It’s easy to say things are better than they used to be [in the US], we’ve made huge strides in terms of physical access, but when you look at employment of people with significant disabilities, in the last 10 years we’ve not really moved the bar,” Lynnae Ruttledge, a disability rights trainer and programme consultant of more than 30 years, told Al Jazeera.
“I’m not satisfied. I know there’s a lot of good that happens in the US, and good fundamental legislation with the ADA and other things, yet we still have people that, because of disability related benefits, have to choose between health care or going to work, to choose between a nursing home or community based supports, because that’s still the reality in 2013.”
Ruttledge, who has administered $4bn in federal resources to serve more than one million individuals with significant disabilities, believes the US is poised and equipped to be a world leader in the field, but there is much work yet to do.
“I will not rest until people with disabilities have the full participation they should, and until they are included in every aspect of society they should have,” she added. “But people still have really low expectations about whether people with disabilities should be fully included in the community, so we’re not where we ought to be as a country.”
According to Ruttledge, the US system is one that discourages many poorer people with disabilities from attempting to become middle class – because if they did so, they would lose many of their benefits.
“We are still in a system that forces people with significant disabilities into poverty,” she said.
A different perspective
French, who became quadriplegic at the age of 13 when he broke his neck in a diving accident, explained to Al Jazeera that his disability had given him with an increasing awareness of gratitude, compassion – and love.
“In having, for a time, everything taken from me that I thought was important when I first had my accident and experienced my disability for the first time, that was devastating to feel my independence and mobility were gone,” he said. “These were of course things I’d taken for granted, and the ability to do the littlest things was gone. That was difficult for me to wrap my head around, and imagine that those parts of my life were no longer available to me. I didn’t know all that could be gone that quickly and that easily.”
Since then, French has made it a practice to remember the day he broke his neck, and “to endeavour to see everything around me with an equally keen appreciation and gratitude for all of it as a gift … I work hard to not take anything for granted. And I realise if I feel a positive emotion, I need to share it – and the negatives – because it could be the last time I feel that emotion and be able to share it with someone.”
His attitude, however, is constantly challenged by the world that people with significant disabilities find themselves in.
“The oppression and discrimination and prejudice are relentless. The pressure to over-perform is exhausting. You can’t just be equal to your peers if you have a disability, you have to do better than someone else just to be equal. For me, I have peers who are directors of agencies, and they look alike, act alike, in that they don’t have a disability. Their mere physical presence doesn’t draw attention to them as mine does for me.”
And with extra attention comes a greater level of inspection and examination.
“Everything I do is scrutinised to a greater degree,” French added. “The same concerns can be raised about me as about them, and for some reason for me there’s a heightened sense of urgency that the concerns may be true. Like: ‘Well, he may not really be capable of doing this job at this high of a level, so we really ought to look at that.’ And that’s exhausting because I see able bodied people getting a pass when I don’t, and it’s discouraging, frustrating, and maddening.”
What French speaks of is brought into focus when one considers the fact that he manages more than 400 people in his current position, and is known by his peers as a true pioneer and powerful advocate in the disability rights movement.
“So you over-perform and out-perform, and you’re still seen as different,” French concluded, an experience that Brouner has had as well.
“It’s always an efficiency and productivity argument when it comes to the workplace,” said Brouner. “It’s about money, and people being able to work harder and faster, but I would rather have something that causes me to do something differently because that’s where the innovation is, and innovation comes from having to do something a different way.”
Like French’s learned gratitude, Brouner’s experience of her disability has turned the mainstream negative perspective of disability on its head.
“Disability challenges conformity, and also biological fundamentalism,” she continued. “The idea that if we can modify something to be bigger and stronger, then it’s better. I don’t know that it is, and I think people with disabilities are on the edge of that. I don’t think people with disabilities are seen as innovators and people who push that envelope, but in reality, that’s what we are.”
Brouner has another interesting idea as to where some of the discrimination comes from.
“I think the medical industrial complex sees us as people they didn’t know how to fix and thus as a sign of their own weakness, so that’s why there is frustration. But I don’t think most people are malicious. I don’t think they wake up and say, ‘I want to be a discriminatory b***ard.’ I think there’s just a cluster-f**k in their head.”
She was clear about what happens when she refuses to attempt to normalise her condition.
“The desire to make my disability look ‘normal’ translates into a lie. A sanitisation of what my experience is in order to make other people comfortable,” she said. “I need to be able to give myself enough credit – and the other person – to show them that it’s not always that neat. If people don’t see what it really is, how can they really respond? But it’s a huge risk and it makes me feel afraid sometimes, because I don’t know what my relationship is going to be like with that person in the future.”
Clearly, Brouner doesn’t buy into mainstream concepts of productivity and strength.
“Pushing only for a certain kind of intelligence or ability is pushing for conformity, and only pushing to keep the speed up, to keep certain routines going, but when things go slower, and there’s time for a conversation, or someone needs something, that’s when you learn what you and we are made of, and you learn how hard you’re willing to work for something.
“People are reminded of their mortality when they see people with physical disabilities,” Brouner said, then leaned forward in her wheelchair and paused. “I remind people of death. It confronts them. To have your very presence make people uncomfortable, if I continue to think about that my whole life I couldn’t ever go outside. Now, when I’m at my best, I feel compassion for people that I see this happen to. But I have an eight month rule socially, which is if you still can’t use the word “walk” in a sentence around me, I might put some distance between us, because it’s not my thing to process, it’s yours.”
A way forward?
Given this complex world of myriad challenges facing people with disabilities in the United States, where can one look for solutions? How can things be improved?
French explained how he moved out of poverty long ago, but that his financial success had brought about the aforementioned discouragement from social mobility, by the fact that he lost much of his financial assistance as his income increased.
He now has to pay for some of his personal attendant services and medical supplies; when he was earning less he did not.
“I pay $30,000 each year from my net income,” French explained. “My peers who earn the same income as I have a much greater amount of discretionary revenue, and they can spend it on vacation homes, travel, cars, etc. But for a lot of people with disabilities they think: ‘What’s the point? I’ll have just enough money to survive, but not to thrive.’ And we guage success in your ability to not just survive, but to thrive.”
But not having coverage for personal assistant services, interpreters, and other services, and not having them more readily available, isolates people with disabilities from living in communities, and have what they need in order to live a full life.
This is how not having these services limits people with disabilities’ ability to succeed.
Nevertheless, French’s work towards solving these problems continues in earnest.
Ruttledge, meanwhile, works to avoid complacency in the US when it comes to disability rights, given the Americans’ with Disabilities Act, and other helpful historic legislation.
“We can’t get complacent about the rights we have in the US,” she said. “Realising that on any day there are legal arguments being raised against the ADA, [and] these challenges go all the way to the supreme court, and we could have to fight the battle all over again to get amendments to the ADA.”
Ruttledge believes the disability rights movement in the US can learn from strategies used in other countries, and that there is power to be gained from having people with disabilities becoming elected government officials.
She believes that this needs to happen internationally, so that others in government “can learn from people with disabilities who are at the table from the very beginning”.
Brandon believes if it were possible to deal effectively with attitudes faced by many people with disabilities, “all the other major issues would be greatly minimised”.
Alongside these thoughts, Brouner maintains that the purpose of the disability rights movement is not the struggle in itself, but to reach the goal of people living the lives they dream of.
“I want a world where people have the knowledge that they will be OK, even if they are not OK. Even if they acquire an illness or lose a lot of function, they will surprise themselves with their own resourcefulness, and they’ll be surprised by the resourcefulness of their community. Because if we really believed that together, we’d live in a world without fear, and we’d live there together.”