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Thursday, November 20, 2008

Go Irish!

This post is not about football but the city of Dublin. Thanks to BA Haller and Media dis&dat I read that the Dublin City Council is determined to make Dublin the most accessible city in the world for people with disabilities. Yes, you read that sentence correctly: the aim of the Dublin City Council is to make Dublin the most accessible city in the world by the end of the decade. Thus while American politicians are slashing and cutting services for people with disabilities and waiting lists for essential services are growing at an alarming rate on the other side of the Atlantic Ocean one city is embracing access for all disabled people in a big way. When I read about the aims of the Dublin City Council in the Irish Times I was skeptical. Such a lofty goal generates great headlines, positive press, and can be quickly forgotten within days. Based on my reading, the Dublin City Council is serious about becoming the most accessible city in the world.

I never cease to be amazed by the disparity in access for people with disabilities. One town can have a major commitment to access while a few miles away another town is grossly inaccessible. Wealth is not a variable. For instance, Greenwich, CT one of the wealthiest communities in the nation has been in the news because the renovations of the local YMCA have not as yet included wheelchair access. The YMCA is open and serving all Greenwich residents except for those that use a wheelchair. Disabled patrons are supposed to wait to enter the YMCA until next summer when renovations are complete. The backward and negative attitude of the Greenwich YMCA creates a sharp contrast to the progressive policies in other towns and highlights why Dublin's goal to become the most accessible city in the world is critically important. Simply put, the Dublin City Council understands the importance and larger meaning of making a city 100% accessible. According to Peter Finnegan, director of the council's office of international relations and research, access is not limited to ramps and elevators. "It's about people who are getting older, people with children in push chairs, people who might fall and be on a crutch for a period of time. People should realize that this issue is likely to affect them at some stage in their life cycle". Finnegan went on to state that "We're not just putting right the wrongs of the past--anything that's done in the future must be done to the highest standards". Wow! I cannot imagine any politician or public figure in American making such a statement.

As of today, Dublin is not 100% accessible and I am sure there are major issues that need to be resolved. However, the City Council goal is remarkable given the global economic turmoil. Dublin does not want to meet the legal requirements with regard to access they want to create universal access everywhere. This effort reminds me what happens when the bar for access is raised. When I was in college most universities were inaccessible and had no plans or desire to change. But Hofstra University where I earned my BA stated their goal was to make the campus 100% accessible. At the time, I thought this goal was nothing more than an effort to get a headline in local papers. My skepticism was misplaced--Hofstra was and remains a model for other universities in that the campus is entirely accessible architecturally and culturally. This is why I think Dublin's stated goal is so exciting. The goal of 100% access is something that all cities and towns should strive for.

Still a skeptic, I have spent much time reading about Dublin's plans for access for all people with disabilities. The website created by the Dublin City Council, Access Dublin, is impressive if not a model to be repeated by other cities. The plans calls to improve the infrastructure of roads, footpaths and building as a starting point. An audit of the city in terms of access is under way and will include both private and public facilities. The information garnered is available at Access Dublin and residents and businesses are encouraged to comment about all facilities. Disabled Go has been hired and have fanned out across Dublin to identify and assess what is and is not accessible. A list of public and private buildings, parks, roads, streets, pavement types, and pedestrian crossings are all evaluated and available on line. Complaint procedures are simple and easily completed. Raising awareness about the culture of disability is part of the plan to empower disabled residents and visitors. The Dublin plan created and being enacted upon is worth reading and explained in 64 detailed pages.

When I finished reading the Dublin plan for becoming the most accessible city in the world I realized two things: first, too much of my work day was lost. Second, the goal of every city and town in the United States should be 100% access. Our law, the Americans with Disability Act, has enough holes in it to drive a truck through. Frankly, the older I get the more angry I become at how the phrase "reasonable accommodations" is often morphed into second rate services and exclusion both architecturally and socially. These so called "reasonable accommodations" do not seem reasonable much less fair to me. It does not help that the people who usually decide what is a "reasonable accommodation" are often not disabled and know little about disability. For example, rear entrances to buildings with a sign and buzzer never work. Sure the buzzer may buzz inside but no one answers or at best an extensive delay is involved. The Dublin plan does not allow this sort of failure--100% access means exactly that, total and 100% access. Total access means total equality. What a radical idea. Go Irish!

Wednesday, November 19, 2008

The Most Dangerous Stereotype

I doubt many readers in the United States know who Noel Martin is. Until this week, I had not thought about Mr. Martin in a long time. I recall reading his autobiography, Call it My Life, and found it deeply depressing. Martin became well-known in 1996 when he was paralyzed by Neo-Nazis. At the time he was paralyzed Martin was construction worker and his book was memorable to me for two reasons: first, he wrote with passion about racism and the prejudice black and disabled people encounter. Second, Martin's view of life post disability was morbidly depressing and he wrote that he would commit suicide. Martin is back in the news thanks to a BBC Radio interview conducted by Liz Carr and an "Open Letter" Carr wrote entitled "Dear Noel, is life really not worth living?"

Martin is if anything consistent about one thing: he thinks life as a disabled person is not worth living. He is clearly miserable and has maintained for sometime that he wants to commit suicide at Dignitas, the same Swiss "clinic" where Daniel James died. I consider Martin's firm belief that life with a disability is not worth living to be the most dangerous stereotype people with a disability must reject. Polls conducted in the United States and Europe consistently reveal that when asked if life with a severe disability is worth living the overwhelming number of people respond with a resounding no. In fact, polls consistently show fear of disability is the primary concern about aging and that most would prefer to die prematurely than age into life with a disability. Passages in Martin's book and interview with Carr on the BBC reflect this belief. Martin is adamant that he is not living but rather merely existing. He bemoans the fact he cannot feel anything (Martin is a quadriplegic) and can only watch the world go by. In his autobiography he provides readers with the graphic details of what his life is like and as most paralyzed people can confirm, myself included, the details are not not pretty. Martin maintains that assisted suicide clinics such as Dignitas are doing paralyzed people a favor. Martin notes that 70% of people in Britain would prefer to die than live life as a quadriplegic. Given his physical limitations and dependence upon others, Martin thinks the laws against assisted suicide that force people to sneak out of the country to die make no sense. Martin's views are well within the norm, a norm that is becoming increasingly common. I have no doubt the belief that death is preferable to life with a disability will become more entrenched as demographics reveal a rapidly aging population exists in Britain and the United States.

The real impediments to leading a rich and full life for disabled people is displaced by a focus on mundane or routine bodily functions. How do you get dressed, urinate, have sex, cook, clean, brush your teeth, wash your hair, put on a jacket, drive a car or get a job when you cannot walk? Each and every one of these concerns and many others have a standard set of solutions. The real problem disabled people encounter is as simple as it is obvious: their lives are not valued. Martin knows this as do many people with a disability. Martin has elected to accept this social reality, a concession that is as deadly as it is dangerous. The social failure to value the life of disabled people is reflected by substandard care and a system that grinds down and crushes the dreams and ambitions of countless disabled people past and present. Society does not want to question why Martin has a huge pressure sore and has not left his bed in months. Society does not want to know why an electric wheelchair costs as much as a used car. Society does not want to know why 70% of disabled people are unemployed. Society does not want to know why mass transportation systems are difficult or impossible to access. Society does not want to know why disabled people are so seldom seen at sporting events. Society does not want to know why children with disabilities are sent to "special schools". Society does not want to know why quadriplegics often end up in a nursing home.

Instead of solutions to the above issues society applauds people like Daniel James, James' parents, and Martin that want to die. Killing disabled people and accepting the fact their lives are not worth living is a simple solution to a problem that need not exist. Disabled people are thus forced into a bizarre situation-defending their right to exist. At issue is not equal rights but life itself. This is why Martin's desire to die and James suicide are worrisome. In Carr's interview with Martin she argues that life with a disability is worth living and in her open letter to him she wrote that one of the "main problems I have with assisted suicide stories like yours is that the media perpetuates the idea that to be disabled or ill must be the greatest tragedy of all. Disability inevitably equals no quality of life. I know when people read your story, many will agree that yes, if they were in your situation then they would want to die too. Most people are so scared of illness, of disability, of getting older, that wanting assisted suicide is seen as an entirely rational desire. What scares me is that views like these will also be held by the doctors, the media, the courts, the government and all others who have the power to decide if we live or die".

Carr, Martin, myself and disabled people have much to fear. This fear is very real, as real as the fear of disability itself. The accepted stereotype that life with a disability is not worth living is dangerous. This why I am reticent to complain about any physical or psychological concern I may have about my body and mind. If I seek medical treatment will the doctor, nurse, or hospital administrator consider my life not worth living and my existence an overwhelming burden on an already over taxed health care system. If I am depressed, will a psychiatrist consider depression a normal reaction to disability and not prescribe medication. My concerns are not limited to a medical setting. Is the service I receive at a store substandard because my presence is thought to hurt the business' image. Are airline services substandard for disabled people because it is assumed we cannot work and our time is not valuable? Do my neighbors resent me because the presence of a disabled person or group home decreases the value of their homes? I sincerely doubt those that walk think about these questions. Instead, when they see a person with an obvious disability they think "poor bastard his life must not be worth living". This is a dangerous thought process and unlike my bipedal peers I wonder how many people are now living in a nursing home or worse dead because of it. Sobering thoughts at a time when the economy and major corporations are in great distress.