KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.It was a funeral. A time to celebrate the life of a well respected, well liked, well loved friend. There were heartfelt kind words said, stories told. To the casual observer nothing would seem amiss, but to some there that day the chasm between the world of the disabled and non-disabled could not be more apparent.
“He was the least disabled guy I knew”. “He was so full of life you forgot about his disability.” “He never acted disabled”. Innocuous words. Or are they? Let me employ a slight paradigm shift here - Do you think it possible to see yourself eulogizing a friend by suggesting they were the least black person you ever knew? Would you say your friend never acted Jewish, so you never really remembered they were Jewish? No you would not. In the world of disability, the disability describes the person. The label defines the perception and the reaction from people in general. To a person with a disability, to the family of a person with a disability, it is clear the non disabled population, at times, simply does not get it. This is the last battlefield for civil rights. The largest minority in America has the most diverse and least heard voice. I always find it amazing how often people fail to realize this minority group doesn’t cater to age, sex, gender, race, or social status. You can be born into it or you can fall off your polo pony and become a member. In the space of a heartbeat, lives have been forever altered--truly amazing so few really understand that concept. Until of course it happens to them or someone close to them.
In a world sensitive to race and gender issues, this minority group is still stigmatized, so much so that many people refuse to accept disability programs. Many associate the pictures of Jerry’s kids or polio poster children on crutches, with the way that people with disabilities are often treated. They remember the posters and they remember the pity they felt for those children. Some people in the disabled community call it the Tiny Tim syndrome; no one wants to be pitied. It is a fundamental right of a human to have a place in society to feel accepted and productive, to have meaning in their life.
The effort to better the lives of people with disabilities living in America has been going on for a couple of centuries. Yes, I said that - a couple of centuries. In the early 1800’s the first school for the deaf was established, giving rise to the notion that the non-hearing could be productive members of society if given proper training. Later, schools for young men with mild intelligence disorders were established, again proving with help society could make room for those labeled as different. There are sad and highly disturbing pieces of disability history - the spread of eugenics and of course institutions that were more like warehouses to keep disabled people with "their kind" and away from the public. The disgusting ugly laws created to keep people with disfiguring disabilities out of sight as to not upset the general population with their “deformities”. Despite the long and sad chapters of ill treatment there were numerous progressive moments - Samuel Gridley Howe, Helen Keller, Franklin D. Roosevelt, the Kennedy family and so many others pushed forward the belief that it was only right for everyone to have a place in society. This diary does not make light of their efforts by not going into depth about their contributions; their contributions were many and made an enormous difference in lives of thousands. I've chosen to begin at a time in history when civil rights were at the forefront of American culture, when organized groups began to fight for the equal liberties, equal justice and equal opportunity under the law.
The Civil Rights Movement was the catalyst that created the first organized disability activists, people determined to create laws to ensure that the rights and well being of the disabled were protected. There had been a few laws enacted on behalf of people with disabilities, but none on a national level. One activist dared to do the unthinkable at that time, he sued to get into the University of California. In the early 60’s Ed Roberts set out to prove a disability doesn’t render a person unable to pursue a college education and work. Roberts took his cue from James Meredith, the first black man to attend the University of Mississippi after he sued for the right to go to school. To Roberts, his civil rights were just as important as Meredith’s; while his were not based on race, he was denied access simply because he was a paraplegic. After a long battle Roberts prevailed and began to prove his disability did not hinder him from getting a education. Actually that was the least of his problems, the biggest issues he faced were accessibility to buildings, transportation and assistance from an aide to help him manage life on his own. Robert’s case propelled him into a spotlight, giving him an opportunity to appeal to disability advocacy groups across America. He encouraged them to organize and protest for laws giving people in wheelchairs access to public buildings and public transportation. The result of their activism was the 1968 Barriers Act, and the 1970 Urban Mass Transit Act. The simple act of using a lift to get on a bus is pretty much taken for granted today. But back then people in wheelchairs, like Ed Roberts, had to wait and hope for either a ride with a friend or a kind bus driver who made time to help. My kid is in a wheelchair. She has never known a world without curb cuts or lifts for her wheelchair. Thanks to Ed Roberts and his Rolling Quads, thanks to the many who staged sit-ins and shut down mass transit centers and faced arrest - all thanks to them, my kid never thinks twice about not having a way to travel or navigate sidewalks and stairs. I think of Ed Roberts and I remember his gift to disability is proving that anyone can contribute despite their limitations. Richard Bach says it best in his book Illusions: "Argue for your limitations, and sure enough, they're yours".
Roberts still battled with needing personal assistance for daily activites. There was no funding, no training, nothing that would enrich the life of a person and allow that person to live independently in a single dwelling away from the institutions. With the help of Berkley University Roberts, John Hessler, Hale Zukas and many others created the Physically Disabled Students Program. Later the work done there would become the core leading to the creation of the Center for Independent Living in 1972. This is the ground from which the battle for the right for a disabled person to live in a community was first waged. The first step to creating independent living was to ensure the civil rights of the disabled were protected. The Rehabilitation Act of 1973 prohibits discrimination against a person based on disability. It further eliminates discrimination based on disability if that person qualifies for services and funding from the federal government by meeting all other requirements. The final part of this fight would come later when Medicaid recipients were granted funding for an assistant aide to help them manage a more independent life.
Ed V. Roberts January 23, 1933-March 14, 1995
In the 90's The American Disability Act would come along with high hopes of ending discrimination in the workplace, aid in requiring buildings be constructed with the accessible bathrooms and elevators and doors. Out of ADA came the Olmstead Act in 1999 finally defining the right of the disabled individual to live within a community and have a choice as to where he or she would live in that community. All this said the true scope of ADA has been narrowed considerably by the US Supreme Court. Leading many to believe the intent of the law as passed by Congress in 1990 was anything but satisfied by the court's decisions, especially in the area of employment for the disabled.
Unfortunately, the Supreme Court’s progressive bent has not carried over to the employment rights of people with disabilities, where its decisions have primarily been conservative with restrictive interpretations of the ADA’s employment provisions. For example, it ruled that people whose medication or assistive devices mitigate the symptoms of their disabilities might not be covered by the ADA , and that state employees cannot sue their employers under the ADA in federal court for money damages.Where are we now?
In its past term, the Supreme Court heard three more ADA disability employment discrimination cases. Naturally, many people in the disability community were concerned that the Court would use these cases to further erode their employment protections under the ADA.
The Court addressed three major components of the ADA’s employment provisions: the definition of disability, reasonable accommodation and direct threat. In each of the cases, it ruled in favor of the employer with interpretations contrary to what is widely held to have been the intent of Congress when it passed the law.
Employment Rights Under the ADA
(This is a clear explanation of the most recent case law)
Money remains a constant issue for disability services. Funding for independent living assistance is on the chopping block - again. Along with funding for oversight of assisted living centers and group homes. State governments are pushing for people to go into nursing homes or return to institutions rather than fund an aide. More often than not these aides are not full one on one 24 hour assistants. They’re more like the home health care people who come out a few times a week. Group homes remedy this by having aides around the clock for 6-8 people living in the house. The cost of the aide is less than the overhead for facility care, yet the state governments are determined to end community based living situations. Sadly there are a few states pushing for a repeal of the Olmstead Act as well. Housing is still a huge area where people with disabilities are greatly undeserved. Slots are limited and people wait literally years to get out of institutions or out of their parents homes.
In my home state of Texas we are now faced with a new and frightening abuse of power by probate judges. These judges have the right to hold secret hearings to remove guardianship from parents, adult children--anyone who decides to challenge care plans developed by the state or a service provider. Such is the Covington case. Two aging parents decided it was time to put their 40 year old Downs Syndrome daughter into a group home. The group home service providers decided the girl's behavior demanded drug therapy. The parents fought back as she had never needed drug therapy while she was at home. The service providers filed with the probate court to have the parents removed from guardianship. Guardianship was then handed over to a "guardianship provider" in other words, a business. Yes it happened. And yes, there is diary coming about this case and at least one other case in which the same probate judge used secret hearings, removed the guardians and put a guardianship provider in charge.
Marriage inequality is not limited to the gay and lesbian community. People with disabilities face numerous hardships when they try to marry. It is a murky area to be sure and much needs to be considered especially in terms of medical issues and Social Security benefits. But there is no real reason why two people with an ability to make decisions for themselves should not be allowed to marry. Right now, in Texas most disabled couples (either with both partners disabled or one partner disabled) chose to go through with the bells and whistles of a wedding without the actual license since there is every possibility the state would look at a legal union as a reason to reclaim benefits based on income. Parents try to grapple with not only the legal end of it, but the emotional end as well. From my own experience my daughter is entertaining the idea of marriage, but she's more caught up in the wedding and the hoopla with that, her boyfriend--he just smiles and says whatever makes her happy. Keep in mind they have cerebral palsy and other issues. So what to do? I don't know, we're still working on it. Some states like Minnesota have fantastic supports in place for marriage, others continue to believe people with disabilities are not suitable for marriage consideration. Just like in the gay and lesbian community this is more proof that our government considers marriage a privilege not a human right.
Those Wedding Bells....
A parent's thoughts on the marriage of two young adults with Downs.
The Individuals with Disabilities Education Act (IDEA) is still grossly underfunded and services for disabled children have largely been switch over to a consultant model. Teachers are given information/instruction for various therapies and are expected to become lay persons as carry out goals set by a therapist.
The US Department of Education has recently begun to implement a national Common Core Curriculum. The goal is to raise the bar on educational performance and create a more uniform course of study across the US. Disability advocates have been concerned about certain provisions of the curriculum as it relates to the Individualized Education Plan specified in IDEA. The goal is put more students in the regular classroom setting, however there is little explanation as to how these students will be placed and how supports will be used. Money has been appropriated for some of these support, however the money came without strings and there is no way to insure support will provided or if school districts will simply place children with disabilities in the classroom and shore up budgets with the money intended for their success.
Common Core Implications for Special Ed Students
Texas has opted out of the Common Core Curriculum. While I'm aggravated because my youngest son will no doubt be effected by this choice. I'm grateful because I know if there's away for the Texas Education Agency to mess up special education services, especially with non-determined monies on hand, the TEA administration will find a way to make it happen. Opting out while the rest of the nation gets the bugs worked out, is probably a boon for disabled students in Texas.
The complaints for ADA have been growing but the funding for Equal Employment Commission to investigate claims has been drastically reduced so there is little follow up. Only the most overt cases of abuse receive attention by either the EEC or the Justice Department. A few years ago a family having dinner in a Plano Texas restaurant was asked to leave because the couple's daughter was making odd noises and the manager said it was upsetting other customers. The family filed a complaint and the case is still under investigation.
In short, it is a sad mess.
There is not one group who speaks for the disabled community. The community is hugely diverse, there is no way one group can attend to the needs of all. It is a given that the needs are great - quality of life, medical, education, emotional, technology, adaptive needs. Why is it the government can find money to build war toys, fund ignorant pet pork projects but finds nothing for the most vulnerable among us? How much longer will members of Congress refer to the disabled community in carefully crafted terms implying "that community" is a burden, “that community" contributes very little and shouldn't be given priority? At what point does "that" community finally get pissed off and scream enough?
The solutions are there. We begin by peeling away the stereotype, by ending the use of labels. We begin by easing the fear of being different because we were born with a disability or we were hurt or became ill. We simply begin.
Think of the many contributions Stephen Hawkins has given us, born with a brilliant mind inside a body that is greatly limited. Allowing the disability to define the person is to me the greatest tragedy in the disabled community.That mindset creates a diminished sense of self worth, and no one should be forced to live in a diminished capacity for any reason.
If you are a person with a disability or if you are the parent, sibling, spouse, best friend - Advocate. Find a group in your area, learn about self advocacy, stand up for your rights or stand up for your loved one’s rights. Honor Ed Roberts by keeping his work alive and thriving. Let’s end the Tiny Tims, the pity and the fear of being stigmatized - Instead of noting the disabilities, how about we note the abilities for a change?
I don’t have the answers. What I do have is a kid who deserves a world that she commands, not a world where she is a second class citizen. She deserves a world she will thrive in when I’m gone. I know that won’t happen unless I stand in her place now and scream ENOUGH.