Stephen Hawking accomplished many truly amazing things in his life. One of them was writing “A Brief History of Time,” and another was surviving until age 76.
He was diagnosed with ALS at the age of 21. Most people with his horrible disease live only a few years after their diagnosis. His longevity, as well as his scientific discoveries, astounded much of the world.
Below are links to two articles: In one, Dr. Hawking talks about how humor played a big role in dealing with his disease. The second one has some examples of when this humor was on public display.
In the last week, I have read several articles (two of which are attached below) about both the Paralympics and the death of Steven Hawkings. Various viewpoints have been expressed, but the ones that got my attention were the ones who were critical about the emphasis by the press on disabilities.
The main objection seems to be about the press’s focus on Mr. Hawkings and the Paralympians “overcoming” their disabilities and being a source of “inspiration” for others. The critics refer to this as “ablest” discrimination, of putting people with disabilities in a separate human category and not thinking of them and their accomplishments in the same way as people without disabilities. In this way, the argument goes, they are trapping these people into a stereotype. And a natural consequence is that this “differentness” easily slips into a license to discriminate, consciously or unconsciously.
While this is a very understandable viewpoint, I wonder if we might be in danger of missing the bigger point here. I have definitely been a victim of disability discrimination, with people being both overly patronizing and overly judgmental. And while these attitudes have definitely had negative consequences, I don’t think it helps if I respond by trying to ignore my disability. It is part of who I am. And I have learned the hard way that if I try to minimize or ignore it, I run the risk of injuring myself, both physically and emotionally.
So when I read about people like Steven Hawkings, Helen Keller and Ed Roberts, I am inspired – not just by their accomplishments but by the way they have dealt with their disabilities. Dr Hawkings made no attempt to divorce himself from his disability when he suggested that we “look up at the stars and not down at our feet,” and that he had traveled the universe “from my wheelchair.”
Tonight is Oscar night, and much has been made about the fact that Hollywood is finally becoming more diversified. There is a lot of buzz over films like “Get Out” and “Black Panther,” as there should be.
But how is Hollywood treating peoplewith disabilities these days? One could easily point to heavily nominated films like “The Shape of Water” and “Three Billboards outside of Ebbing, Missouri” as evidence that people with disabilities are finally coming into their own.
But are they really? I have attached two articles written by people with disabilities, who have a decisively personal take on these movies. The first, by Elsa Sjunneson-Henry, discusses her reaction to the main character in “Shape of Water.” As a woman who uses a hearing aid and has vision difficulties, she could relate to much of what the heroine (who is mute) goes through. But it was gut-wrenching for her to hear the heroine say that she was “lesser” than other people, and she was glad that her love interest (a monster) did not realize this.
“At its core,” writes Sjunneson-Henry,”…the Shape of Water asks us to consider what a freak is. Is a monster a god? Is a disabled woman a freak? An outsider? Can she be loved or understood by her own kind, or are the monsters the only ones who can truly understand her?”
In “Three Billboards,” one of the main characters is a dwarf. To the movie’s credit, he is portrayed by Peter Dinkladge, an actor who is in fact a dwarf. But to Eva Squiers, a writer who herself has a form of dwarfism, there was still a whole lot wrong with the way the character was portrayed.
“Dinklage plays James, who introduces himself as the ‘town midget’and whose primary function in the film is as the butt of many jokes,” she writes. “In the cinema where I saw Three Billboards, the audience cackled whenever James spoke. This was painful enough as a response to the script’s cheap shots at short-person jokes – for example when James excuses himself to use the “little boys’ room” or is asked if he can juggle.
“But I was more baffled when the people around me laughed at distinctly unfunny scenes of James playing pool, holding a ladder or asking Mildred (Frances McDormand, whose performance has put her in the running for a best actress Oscar) out to dinner. The source of this hilarity seemed to reside in the mere fact that James existed and that he was short; how funny that he, with his non-conforming body, should have the audacity to present as a desiring subject! What a laugh! This clunky reliance on ableist tropes as a form of humour was disappointing coming from a film lauded for its “moments of sharp, cinder black comedy.”
There are a variety of opinions about both of these movies, and the two writers here do not necessarily have more of a “vote” than anyone else. But because their disabilities continue after the movie is over, they have a particulary knowledgeable perspective that should be heard.
The term, “politically correct” has taken quite a beating in recent years.
The phrase can mean a lot of things, but these days it seems to be used in an insulting manner – poking fun at people who are trying to be attentive to diversity in our society.
Granted, there are situations where “political correctness” is overdone. (Examples might be describing a janitor as a “sanitation engineer” or a bald person as “folically challenged.”) But for every situation where the wording seems a bit overstrained, there are several where in fact, an individual is consistently defined not by who they are, but by what they have. (Examples here would be calling someone in a wheelchair “a cripple” or labeling someone with mental illness “a psycho.”}
Words matter, and the attached article does an excellent job of providing alternatives to some of the labels traditionaly used to describe people with disabilities. If there is a common theme, it is the recommendation to use “people first” language, where the fact that someone has a disability is not the first thing you learn about her. Because quite often, it ends up being the only thing that is remembered.
Let’s say that you keep some valuable jewelry in a public storage facility, and you need to retrieve it for your niece’s upcoming wedding. The facility has only one entrance and you need to use stairs to get inside. But when you get there, you see that some of the stairs have rotted through and it’s not safe to use them. You’ve called the manager and left voice-mail messages, but she has not returned your calls.
An obvious option is to file a lawsuit against the owner. After all, the wedding is fast approaching and the owner is not fulfilling her obligations to you.
But let’s say you then discover that a new law has just been passed, requiring that before you file a lawsuit, you first have to notify the owner (in writing) that there is a defect in her stairway. You must also identify how the owner has violated the law, and then give her six months to work on the problem.
I deliberately said, “work on” instead of “fix” because this imaginary new law also says that you can only demand that the owner make “substantial progress” in fixing the stairs – not that she has to have actually fixed them.
What kind of an insane law would that be? You would be up in arms and so would everyone else who stores property in that facility. How dare Congress put these kinds of restrictions on your right to sue when you believe you have been wronged?
Yet there is a bill, currently making its way through Congress, that would require substantially the same thing for people with disabilities. It is House Bill, 620, the “Americans with Disabilities Reform Act of 2017.”
This proposed law would require that if people with disabilities are unable to access public facilities because they have not installed the accommodations required by law, they can no longer immediately file a lawsuit. Rather, they have to take the steps outlined in the example above.
So for them, there is nothing hypothetical about it. Please contact your representatives and ask them to oppose this nightmarish law.
Because Franklin D. Roosevelt had contracted polio, he was unable to use his legs. But he was counseled to hide this fact as much as possible, to keep him from appearing “weak.”
In the book, “Roosevelt’s Splendid Deception,” Hugh Gallagher chronicles the extraordinary lengths that Roosevelt took to hide his disability from the world. He believed that this would cause him to be perceived as “weak” in his ability to lead the country through very troubling times. Therefore, he asked the press not to photograph him in a wheelchair. And for the most part, the press complied.
Mr. Roosevelt also did other things to hide the fact that he was a wheelchair user. Although he had virtually no strength from the waist down, he built up his upper body and arm muscles so that he could literally hold himself up from whatever podium he was speaking from, disguising the fact that his legs were effectively useless. And in getting to the podium, he would enlist the help of someone (often his son) to walk with him. Grasping his escort’s arm, he would use that leverage and his upper body strength to propel his legs forward – one at a time – until he could reach the podium.
Was this the best way to handle his disability? It is hard to say – those were different times in a different world. But there are some myths and stereotypes that seem to have stubbornly persisted through the years – chief among them that people with disabilities are not quite “complete” and should not be treated as if they are. Perhaps that is why a doctor who is a wheelchair user recently wrote in the New York Times that her competence has often come into question – both from patients and colleagues. She also suggests that much of this anxiety might be mitigated if there were more physicians with disabilities on the scene.
As those with disabilities know, a common reaction to us is discomfort and anxiety. That can turn into fear, because people are reminded that at any time, they could join the ranks of the disabled population. And although Roosevelt did not mention his disability during his inauguration, surely he spoke from experience when he said, “the only thing we have to fear is fear itself.”
Note: The photographs below reflect a change in attitude that Roosevelt would have been very happy to see: The first one represents a perpetuation of the “splendid deception,” portraying him as standing tall and proud. Largely because of pressure brought by disability advocates, a new statue was added in the late 90’s. This one shows him as he really was – every bit as proud and presidential.
For more information about these statue changes, see the article below:
This photo, from the attached Fox News article, is exactly what it appears to be: a peacock in an airport.
A couple of days ago, a woman tried to board a United Airlines flight with the bird, claiming it was an emotional support animal. The airline denied her request.
I am a disability rights advocate, and I passionately support the right of people with disabilities to have and use their service animals. But this is NOT what the law intended! Not only does it create inconvenience and sometimes even danger to fellow passengers and staff, it puts people with genuine disabilities in a poor public light. And in this political climate, that’s the last thing we need.