Disability Futures

Just look through a few people generally accepted as fitting the criteria for autistic savant by virtue of the observations of characteristics each expressed while others documented their savant abilities. 

Thomas Fuller

Between 1977 and 1982, four doctors and a social worker at the Children's Hospital of Oklahoma, in Oklahoma City, monitored the births of babies with myelomeningocele (the medical term for spina bifida). Parents who were poor were told that it would not be appropriate to treat their baby and given an extremely pessimistic picture of their child's future life. Parents from better-off families were told more about the treatments for spina bifida and given more optimistic - and more accurate - information about their child's potential.

None of the parents knew they were part of an experiment. Parents who were assigned to the "pessimistic outcome" group chose, by a factor of nearly five to one, not to have their babies treated. The experiment was not conducted to prove that babies with spina bifida will die if they are not treated. Doctors already knew that. The goal of the experiment was to prove that the families would accept a "do-not-treat" recommendation from their doctors.

It was no coincidence that the babies who died were the children of poor parents. To select the families for the "pessimistic outcome group," the doctors conducting the study developed a "formula" which they published as part of their write-up inPediatrics, the most famous and influential medical journal devoted to the care of children. This is their "formula": Quality of Life = Natural Endowment by the contribution of the Home plus the contribution of Society. In a more mathematical style it reads: QL = NE * (H + S). The doctors measured the "H" - the contribution of the home - primarily in financial terms: family income, family debt, employment and employability of the parents, etc. The parents' "intellectual resources," defined in terms of their educational level, were also included in the calculation of "H," which had the effect of crowding the pessimistic outcome group with parents less likely to challenge the doctors' "facts". Since "Natural Endowment" is multiplied by the other factors, rather than added to them, babies with a greater level of impairment (and hence less "natural endowment") were more likely to be placed in the "pessimistic outcome" group.

For many people, owning and maintaining a home is one of the most significant investments they ever make. But for individuals and veterans living with disabilities, or seniors aging in place, the fact that much of the world outside is not built to accommodate their needs magnifies the value of a comfortable home. It’s vital they and their loved ones have access to the best resources about how to make their homes livable and enjoyable.

Unfortunately, without access to the right resources, creating a comfortable home can be an expensive task.

In Part 1 of the interview Clark talks about his own personal journey, growing up with a disability and what led him to become involved in advocacy and activism work.

In Part 2 of the interview, Clark talks about the work he has done with ADAPT and some examples of actions he has been involved in across the country. Part 3 of the interview Clark discusses the difficulty of bringing the energy of national actions to the local level and then discusses an action that he and others did at the Greyhound Bus station in Grand Rapids.

In Part 4 of the interview, Clark responds to questions around the ableist culture that still exists and the ongoing fight against institutionalized bias. In the last part of the interview, Clark talks more specifically about the climate for disability justice in the greater Grand Rapids area and what efforts and possibilities exist for the movement he is part of.

For those wanting a more detailed investigation of the history of the Disability Rights Movement in the US, we highly recommend the book, A Disability History of the United States, by Kim Nielsen. For those interested in the work of Clark and the local ADAPT chapter, you can find them on Facebook at Grand Rapids ADAPT. In addition, Clark provided us with some archival photos from ADAPT actions and campaigns over the years. Go to this link to see archival photos.

The world is unpredictable and disorderly. Sometimes your train is late; sometimes it rains when it’s not supposed to; the drugstore doesn’t have the brand of dental floss you like. Boundaries are violated and rules are ignored. The green spinach on your plate touches the white chicken, and someone has bought your boxer shorts from J. C. Penney instead of from Kmart. People are hard to figure out. Sometimes they promise and don’t deliver; it’s not clear whether the expression on a face is a smile or a sneer, or, if it is a smile, what it’s about. People say things that they don’t mean literally: they tell jokes and they use ironic expressions. Other people’s minds are a foreign country in which we’re guests, tourists, or strangers, unsure where we are and what’s expected of us.

Some people accept all this as the way things are in an imperfect world, and they get on with life as best they can. Others find these unpredictabilities intolerable. To cope, they construct physical and mental neighborhoods where things are more regular and better arranged. Repetition reassures, whether it’s to do with your environment, your speech, or your bodily movements. People want these sorts of order with different degrees of necessity, secure them with different kinds of success, and, when they don’t succeed, react to failure with different degrees of despair and disengagement.

Therapy animals are holding an ever-more prominent place in our society. Used by people with physical or psychiatric disabilities, service and companion animals can often provide emotional support or perform a specific service or services, such as assisting people with epilepsy. The animal most commonly associated with fulfilling the role of service animal is the dog, however, recently non-traditional animals have been studied and trained as service animals. ABC 7 News looked into this growing trend, and found Professor Aubrey Fine, who has studied the benefits of non-traditional service animals such as birds and pigs. According to Fine, being around animals such as these “changes your neurotransmitters. 

Finding love can be hard enough for anyone, but for those on the autism spectrum, the challenges may seem overwhelming. The disorder can jeopardize the core characteristics of a successful relationship — communication and social interaction. <i>Autism in Love</i> offers a warm and stereotype-shattering look at four people with autism as they pursue and manage romantic relationships.

Tucked inside a tax bill approved by lawmakers last month is a provision that will permit individuals with disabilities to open new accounts established under the Achieving a Better Life Experience, or ABLE, Act in any state, regardless of where they reside.

The change means that people with disabilities across the country will be able to open ABLE accounts when the first state programs are up and running which could happen as soon as February or March, advocates say.

To help deaf and hearing-impaired persons stay safe before, during, and after a hurricane, CDC offers the following American Sign Language (ASL) public service announcement videos.

Preparing for the Storm

• Preparing for a Hurricane
• Preparing for Hurricanes: Prescription Medications
• Evacuating the Area of a Hurricane
• Staying Safe in Your Home During a Hurricane

Staying Safe After the Storm

• Keeping Children Safe From Drowning in Flooded Areas

Cleanup

• Preventing Mold After a Disaster
• Preventing Mold After a Disaster

Filicide - suicide is extremely rare in general global society. It is becoming increasingly common in our community. Worse, each small article about an autistic person of color*, being murdered appears to be not worth a footnote or comment by autism advocacy organizations, autism bloggers even activists.Kelli Stapleton, white, high profile, mother of Isabelle, whose community actively gave financial and emotional support for her efforts to get whatever therapy she thought Izzy needed, attempted filicide -suicide. The media considers every new development in Kelli's trial news worthy. Social media considers what is happening to Kelli Stapleton worth continuous articles, a status, a share or a mention in a plethora of blogs.

Beyond the horrific nature of the murders, attempted murders, and assaults themselves is the greater question of what societal culture is producing parents and care givers who are increasingly coming to the conclusion that murdering their autistic loved ones will be at best forgiven and understood by other parents. It is an increasingly frightening situation, one that has me avoiding the news at times just to evade the nauseous feeling I get when hearing parents making comments that erase the filicide victim and eulogize the murdering parent having never met either party. Meanwhile I am surrounded by parents in their 80s who have lovingly cared for autistic children, now in their 50s, with no help or support all their lives. Saying not having help or respite or supports is an excuse for murder is just not acceptable and speaks to the way we socialize our society to ingest ableism and vomit it all over tragic events like these. I should never have to reach out to a parent and say "read the news again and imagine this child was not disabled.". If you can't see the injustice of filicide because of the disability of the victim, then it is time to do a serious ethics audit on yourself.