Yearly Archives: 2018

About Ableism and Other Imposition of Worldviews

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Recent tributes honoring the life and death of renowned physicist Stephen Hawking have reignited a long time debate on the topic of “ableism”. Images such as this one depicting Hawking free of his wheelchair and walking among the stars are among those sparking a lively debate about ableism.

For me there are really two parts to this debate. What is or is not appropriate in an expression of one’s feelings about the death of a celebrity? And separately does this particular tribute or other similar statements made in tribute to Stephen Hawking really represent ableism.

If you’re not familiar with the term “ableism”, it is a type of prejudice which denigrates those with physical disability in favor of those who are able-bodied. It is a type of prejudice that has parallels to racism and sexism.

Before addressing the claims of ableism, I’d like to address the issue of celebrity tributes in general. When a celebrity dies, we often see tributes to them which are not necessarily in tune with the deceased’s particular beliefs or wishes. We saw the same thing when Steve Jobs died. A number of cartoons depicted him in heaven and/or being in the presence of God which would have been contrary to his Buddhist beliefs. Here’s a page with a good sampling.

http://w99.suretech.com/16846/Steve_Jobs_Remembered_in_Cartoons

There was similar controversy during this year’s Super Bowl halftime concert by Justin Timberlake who projected an image of Prince onto a large screen. Prince had specifically said he did not want to appear as a hologram after his death. Although not technically a hologram, it did have a sort of ethereal holographic feel to it.

The Steve Jobs tributes were undoubtedly disrespectful of his religious beliefs. The criticism of the Super Bowl depiction of Prince was probably a little bit nitpicky especially since it wasn’t really a hologram. Furthermore it was not complicated by religious overtones. But was there anything similarly inappropriate about this particular tribute to Hawking?

This article from time.com documents his beliefs about God and an afterlife.

http://time.com/5199149/stephen-hawking-death-god-atheist/

In various statements, he made his atheist stance quite clear. This included his disbelief of any sort of afterlife. His beliefs about God confused people because he had written famously that if we understood how the universe worked that we would glimpse “the mind of God”. He later made it clear that he was speaking much more metaphorically. For him God was not a particular being with which one would have a personal relationship. Rather God was a metaphorical concept of the manner in which the universe worked. He did not believe in a being like God who was responsible for creating it. He was instead saying that to have knowledge of the universe would give you a godlike perspective.

Similar confusion surrounds statements from Albert Einstein when he famously said “God does not throw dice” in expressing his difficulty with the uncertainty principle in quantum mechanics. In a recent biographical TV series “Genius”. Einstein is not portrayed in any way as a religious person or a man of faith. His defense of the persecution of his own Jewish people appeared to be more based on human rights concern rather than devotion to his religious heritage. It’s pretty clear that Einstein was speaking metaphorically about God rather than from a position of faith.

While this image of Hawking walking among the stars isn’t as blatantly as religious as those depicting Steve Jobs in heaven talking to God, it does presuppose a type of afterlife which Hawking pretty clearly had rejected. The Time article quotes an interview in which he says

“I regard the brain as a computer which will stop working when its components fail,” he told the Guardian. “There is no heaven or afterlife for broken down computers; that is a fairy story for people afraid of the dark.”

Personally I consider myself a man of faith and a man of science even though many find these two disciplines to be incompatible and mutually exclusive. Without getting into that debate, I have to also say I have the deepest respect for those who are devout atheists or agnostics because at one point in my life I was very much an agnostic and I appreciated those who respected my beliefs.

On the other hand, such depictions are an expression of our own personal beliefs about the person. They are an artistic expression of the artist’s reaction to the death of someone they admired or respected. I believe in an afterlife despite the lack of scientific evidence. That is the nature of faith. I tend to believe that heroes of mine who happened to be atheists such as Stephen Hawking, Albert Einstein, and Isaac Asimov who have led exemplary lives and contributed to the good of the world are enjoying Paradise in an afterlife despite their disbelief in an afterlife while here on earth.

So in some respects the image in question expresses my beliefs about the fate of Prof. Hawking whether that image reflects his beliefs or not. Despite his espoused atheism and his expression that religious beliefs were fairytales, I would not describe him as blatantly anti-religion or radically disparaging of those with religious beliefs along the lines of someone like comedian Bill Maher. I would hope that he would understand that such a depiction expressed the artist’s wishes for him rather than be offended by it.

Inappropriate tributes to the dead which disrespect their beliefs and desires are a mild form of prejudice. They are an imposition of one’s own worldviews onto that of another. I think they are relatively minor offenses but there are other forms of prejudice that are more destructive. Racism, sexism, religious intolerance, LGBT intolerance and ableism are all impositions of one’s own worldview one to another.

Perhaps it is disrespectful of Hawking’s atheist stance but is that image ablest? What constitutes ableism? Is it the same as other forms of prejudice such as sexism or racism?

Apart from this particular image, there have been other statements such as “He is finally free of his burden”. While I don’t have links to such statements, I don’t doubt that they exist. And in some respects claims of ableism about such statements are more credible than the charges against this particular piece of art.

I can understand how people who are especially sensitive towards ableism might see that expressed in this image but I do not. Let me explain upfront that anything I’m about to say should in no way be construed to discount ableism as a real and destructive thing. Ableism exists and it needs to be confronted in the same way as any form of prejudice. However I really believe some of what is labeled as ableism is unjustified.

Ableism, racism, and sexism have much in common. They are all distorted worldviews which unjustifiably proclaim the superiority of one group of people over another. They denigrate and dehumanize classes of people. They are born of ignorance. They are born of fear. In extreme cases the purveyors of these prejudices are blatant and unapologetic. But the most insidious forms of these prejudices are those in which the believers are unaware of their innate negative biases.

I believe that this subtle unconscious form of prejudice constitutes 99.9% of ableism. You would be hard-pressed to find someone who would openly speak out against people with disabilities in the same way that we see unapologetic denigration of races, religious beliefs, women, or sexual orientation. It takes a pretty hard core Nazi-like person to speak disparagingly of the disabled.

It is common for people with prejudices to deny them. We have seen obvious racists declare “I am the least racist person you’ll ever find.” The most misogynistic men will proclaim their love and respect for women. Religious bigots full of intolerance hypocritically express a devotion to love fellow all human beings.

In contrast, I believe that when most people have an ablest attitude, they are genuinely unaware of the mistake of their perspective. They are almost always uninformed well-intentioned people who lack the knowledge or perspective to see the mistake of their attitude. Unlike racism, sexism, or religious hatred, people expressing ableism are more often genuinely unaware of the hurtful nature of their misperceptions. Expressions of ableism rarely are an exposure of underlying core beliefs of the person in the way that other forms of prejudice are an expression of basic character flaws. They are more easily educated and converted away from their mistaken understanding of people with disabilities.

Ableism is most often expressed in the form of pity towards the disabled person. They feel sorry for us in our horrible condition. Despite the inappropriateness of the pity and the hurtful nature of being pitied, such expressions come from a legitimately well-intentioned motivation. The condescending attitude comes not from an egotistical sense of self superiority but from a genuine misunderstanding of what it’s like to have a disability.

All prejudice is driven by fear of loss. White supremacists fear the loss of their power and perceived superiority. Sexists fear the loss of their male dominance. Religious bigots fear that alternate belief systems challenge their own beliefs and sense of certainty.

But in the case of ableism, it is the genuine and legitimate fear that someday they will end up with a disability of their own. There is a sense of awe and amazement that someone can persist in spite of a disadvantage which they themselves believe unsurmountable. The fear driven amazement is expressed in condescending, hurtful, and even dehumanizing ways. So even though ableism is not as inherently evil in its origins as other forms of prejudice, the effects of it are no less destructive.

All forms of prejudice are harmful. That harm is very personal to its victims. Prejudice must be confronted, exposed, attacked, denounced and discredited. Although it is difficult to eradicate among its believers, through thoughtful education its spread can be halted. But in our zeal to do so, there is always the risk of seeing such prejudice were it doesn’t really exist.

I am reminded of the joke about the guy who goes to a therapist and the therapist administers an inkblot test. “What does this image remind you of?” the therapist asks. The patient replies “sex”. “What about this?” Again he replies “sex”. As each abstract image is shown to the patient he replies “sex”. The therapist says “Mr. Jones has it occurred to you that you’re obsessed with sex?” Jones replies “Me? You are the one with all of the dirty pictures!”

Sadly in the face of all the real sexism, racism, and ableism… Some people find it where it does not exist. In some respects I think that may be the case in this particular circumstance. I don’t think this particular image is an expression of even subconscious ableism.

It depicts Hawking walking among the stars out of his wheelchair. As evidence that Hawking might not have been offended by the image in that way, I offer up the fact that he had booked passage on a Virgin Galactic flight into outer space where he would experience zero-g. In his New York Times obituary linked here there is a photo of him about halfway down the page showing him out of his wheelchair floating in simulated zero gravity. He is on board a so-called “vomit comet” airplane which flies a parabolic arc inducing a freefall. The smile on his face and the fact that he did not go about this adventure while continuing to be strapped into his chair (which he could have done) tells me that an image of him floating free from his chair would have in no way offended him. While you might point out that the artwork in question depicts him upright rather than floating at an odd angle, I don’t believe that’s a significant difference.

While I am sympathetic and respectful of those whose anti-ableism sensitivities are triggered by such an image, I think there is a significant difference between ableism and other forms of prejudice that make some of it unjustified. I do not believe that all expressions of dislike of a disability are necessarily a bad thing. I think they represent the reality that having a disability is legitimately an undesirable situation.

That doesn’t mean that everything about having a disability is bad. In my own tribute to Stephen Hawking, I explained that the reason that I so admired him and considered him a role model despite my natural tendency to avoid role models was that he had made positive use of his disability. Because of the limitations imposed on him by his physical condition, he adapted his methods of reasoning to rely upon mental visualization techniques rather than writing out derived equations as is the usual strategy. This gave him insights to the cosmological questions he was pondering that had escaped notice by other physicists in his field. So there was an aspect of his disability that was undoubtedly an asset. Recognizing that in some ways my disability is a God-given gift or from a non-theological perspective simply asset in my life, I felt a connection to Stephen Hawking. I wrote in my tribute to him “Understanding that Hawking had similarly turned his disability to his advantage was a conformational data point to prove my hypothesis that having a disability wasn’t all bad.”

The clichéd proverb states “When life gives you lemons… make lemonade” acknowledges the fact that lemons are sour but you can still make something good from them. It doesn’t deny the fact that your life has taken a negative turn. It only proposes that such negatives can be turned around into positives.

All prejudice presupposes an illegitimate or insignificant difference between groups. One race is considered superior to another race for no justifiable reason. Any measurable differences between races can always be justifiably explained as being caused by the effects of institutional racism rather than being justifiable reasons for racism. Sexism against women is not based upon the legitimate biological differences between men and women but is rather a defense of institutional and cultural domination of men over women. Hate against different religious groups or directed towards sexual orientation have their roots in belief systems rather than measurable superiority. Such prejudices are inherently subjective rather than objective.

But in the case of ableism, there are objective, demonstrable, measurable differences between able-bodied people and people with disabilities. These differences should not be used to denigrate the value and basic humanity of people with disabilities. Ableism is wrong. It is evil. It is real and should be confronted and stopped. But because people with disabilities are measurably different than able-bodied people, not every attempt to discuss these differences or to describe a disability in a negative light is in fact evil ableism.

In order to live a productive life with a disability, it is absolutely essential that one come to terms with one’s condition and to accept it as a part of themselves. It is okay to identify intimately with one’s disability and to embrace the positive aspects of it. But to deny that there are negative aspects to it is to deny reality.

I offer the following challenge to people with disabilities. If someone presented you with a magic button that you could push that would instantly remove your disability without robbing you of the insights, perspective, and giftedness that your disability has provided you, would you not push that button?

No matter how accepting I am of my situation… No matter how much I view my disability as not only an asset but literally a gift from God above. I would push that fucking button in a millisecond. My guess is that the vast majority of people with disabilities would do so as well no matter how deeply they embraced their current condition.

The difference between having a disability or being of a particular race or gender is that by its very nature it has the power to enslave you. The enslavement of race or gender is externally imposed. The enslavement of disability comes from the disability itself.

Did black people like being slaves? Do they enjoy the economic disadvantages imposed them by their race? Do they embrace being presumed guilty and gunned down in the streets by racist police? Of course they do not. It doesn’t mean they don’t want to be black or can’t be proud to be black.

Do women enjoy making 70 cents on the dollar compared to men? Do they enjoy the degradation and sexual abuse? Recent events show that we are finally listening to their expressions about the extent of this degradation. While they fight to be free of such limitations it doesn’t mean they don’t want to be women.

The desire to be free of the disadvantages of a disability is not an assault on one’s identity as a disabled person. Much of what is mistakenly labeled as ableism is NOT an expression in the belief of the superior value of able-bodied people over disabled people. It is a legitimate recognition of the genuine disadvantages of disability.

Many of the negative aspects of having a disability can be mitigated by changing people’s attitudes. By changing society. By changing negative stereotypes. By educating people. But having a disability is inherently, objectively, measurably a disadvantage. It is legitimate and non-ablest to point out these differences. It is legitimate to want to be free from these inherent disadvantages. And it is not only legitimate but praiseworthy to hope for others to be free of those disadvantages.

Part of the problem comes down to evolving terminology. We have evolved our language in such a way that it is driven more by the forces of arbitrary political correctness rather than logical reasoning. Words are abused in such a way that they lose their legitimate meaning. I’ve talked about this before in other essays but I will try to summarize my beliefs here.

I have a “disease”. It is a genetic neuromuscular disease called Spinal Muscular Atrophy Type 2. It is part of who I am. I literally would be a different person without it because it is genetic. Other diseases are caused by bacteria or viruses such as polio or AIDS. Similarly there are medical conditions caused by outside forces. Cerebral palsy is typically a result of anoxia during childbirth. Spinal cord injuries come about by physical trauma. All of these are “medical conditions”. Short of a medical cure or some natural healing process, these don’t go away. They are an undeniable reality.

My disease and any other medical condition results in a “disability”. I am literally dis-able to do certain things. I can’t walk. I can’t take care of my personal needs. I cannot feed myself. I have virtually no use of my arms. These are things that objectively I cannot do. There is truth in the abused cliché “everyone has a disability.” You can’t fly without an airplane. You can’t lift 5000 pounds with your bare hands. You are literally dis-able to do these things. The difference is, you don’t expect to be able to do these things and nobody expects you to. Nobody else can either.

That’s where the word “handicap” comes into play. Unfortunately is a word that has fallen out in favor but it still has an important legitimate meaning and use. Your handicap is the way that your disability interacts with your environment. When a disability restricts you from doing the things you want to do and/or that the world around you expects you to be able to do then it becomes a handicap. Nobody expects you to lift 5000 pounds with your bare hands or fly like Superman. And even though it might be fun, that disability really doesn’t adversely affect your life. Being able to walk, care for myself, engage in the types of physical activities that most people is something that I could reasonably want to do and that the world about me expects me to be able to do.

People militantly declare “I’m not disabled”. Bullshit! That’s denying reality. You have a disease or medical condition. Willing it away or denying it doesn’t work. Short of a medical cure, you are stuck with it. Similarly that disease or medical condition gives you a disability. Again willing it away, denying it, ignoring it doesn’t work. Handicaps are different. Handicaps can be changed. You can overcome handicaps. Change my environment. Put me in an environment with curb ramps, elevators, accessible transportation. Provide me with affordable assistant technology such as wheelchairs, adaptive computers, alternative communication tools. Adjust society’s expectations of me. I can eliminate my handicap. These strategies will never cure my disease, remove my medical condition, or give me abilities that I will never have. They do eliminate handicaps.

One of my problems with the shift from the term handicapped to disabled is that it is applied to assistance programs. By establishing programs for disabilities rather than handicaps we are saying that the disability, in and of itself, entitles you to assistance. I know of people with disabilities who do not have a handicap and do not need or deserve any sort of assistance. Apart from medical research, no benefit or program is ever going to get rid of a disability. But appropriately administered government and private programs can and do eliminate handicaps.

Those who declare “I’m not disabled” or “don’t call me disabled” are denying reality. Scream that you are not handicapped and I will support you. On a good day neither am I. Deny your disability and you are living in fantasy land.

Denying a disability exists is one extreme. Denying the negative aspects of disability is another extreme. There has to be a middle ground in which you can embrace the giftedness of a disability and own it as part of your identity without denying the reality of the inherent disadvantages to it.

Anything that diminishes our humanity or is an expression of a lack of respect for our humanity and free will, regardless of what kind of -ism it is, must be challenged, intolerated, and eliminated. But crying wolf and unjustifiably accusing people of such denigrating attitudes where they don’t exist only serves to perpetuate that which we are trying to oppose.

Afterward

This note is added April 14, 2018.

Stephen Hawking was interviewed in an episode of Star Talk by host Neil Degrasse Tyson. The episode aired shortly before Hawking died. I just got around to watching it today. In it, Tyson asks “Stephen, you’ve been in that zero G airplane, I’ve always wanted to go. I wondered where it felt like for you.” Hawking replies (as they show photos of him floating in zero G smiling) “It was wonderful to float weightless free of my wheelchair. I could’ve gone on and on and on.” For me that definitively ends the debate on whether or not postmortem depictions of him free of his wheelchair are appropriate for not. The words “free of my wheelchair” are his words. And he didn’t say “it was a fun experiment one time”. Instead he said “I could’ve gone on and on and on.” Case closed.

A Personal Reflection on My Role Model Stephen Hawking

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I have to share my thoughts on the passing of Stephen Hawking. The renowned physicist and pop culture icon who expanded our boundaries of knowledge of the nature of the universe did so while fighting a lifelong battle with ALS motor neuron disease. His iconic electronic voice is the most famous piece of assistive technology for the disabled ever created. He passed away today March 14, 2018.

I was born with a genetic neuromuscular disease known as Spinal Muscular Atrophy type 2. Like Hawking’s disease ALS, my own disease SMA affects the motor neurons. Also like Hawking, I’ve had a lifelong passion for science. I’ve always been a curious person but that curiosity was given an outlet somewhere around fourth or fifth grade when I discovered science. I have a logical mind and it was obvious that scientific pursuits were within my grasp despite my own physical disability.

It might seem obvious that Stephen Hawking would be a hero and a role model for me but I was not always anxious to embrace role models. He earned that title with much difficulty. Let me explain.

With my passion for science and intellectual pursuits, I was especially fascinated by stories I heard about Albert Einstein. He passed away in 1955 just a few months before I was born but I knew that he was considered by consensus “The Smartest Man in the World”. In fact the name Einstein has become a synonym for genius. For example “Smartass! Do you think you are some sort of damned Einstein?”

I learned that not only was Einstein considered The Smartest Man in the World, he was actually a kind of a celebrity and pop cultural icon. He was the intellectual equivalent of a rock star in an era before rock ‘n’ roll.

In some ways I felt cheated that I was living in a time that did not have an obvious successor for both the roles of Smartest Man in the World and intellectual pop culture icon. While scientists such as Carl Sagan, of whom I was a great fan, achieved celebrity status and he was a man of great intellect, he did not rise to the level of Einstein as a renowned genius. I always felt there should’ve been some sort of committee to decide who was Smartest Man in the World. Oh sure they give out Nobel prizes in physics, chemistry etc. but even those people typically only occupied the news cycle for a few seconds after winning their awards. There was no heir apparent to Einstein and it didn’t seem to bother anybody except me.

I can’t say for sure when I first became aware of Stephen Hawking. But he immediately became a hero for me. Not only was he fast approaching (and eventually reached) the status of consensually the Smartest Man in the World, the fact that he did so with a severe disability was an added bonus for me. In more recent years he definitely has become the intellectual pop culture icon for which I longed. Others agree with me that he was as iconic as Einstein. In Hawking’s New York Times obituary it says:

“Not since Albert Einstein has a scientist so captured the public imagination and endeared himself to tens of millions of people around the world,” Michio Kaku, a professor of theoretical physics at the City University of New York, said in an interview.

It is speculation on my part because I did not experience the Einsteinian era myself but I would say he fulfilled that pop-culture role even more than Einstein himself. Not only was Hawking a best-selling author and the subject of multiple documentaries and dramatic biopics, he had cameo parts in TV shows such as The Simpsons, Star Trek: The Next Generation, and The Big Bang Theory. The latter of those might never have even had a title were it not for Hawking. His electronic voice is much impersonated by standup comedians. Although the times are different, I really don’t think Einstein achieved those levels of celebrity.

For some bizarre reason, most of my life I’ve not really found myself in need of an inspirational role model. I looked at other famous people with disabilities with a bit of cynicism. In my autobiographical magazine article “The Reunion” I told the story of a group discussion we had in my high school years in the early 70s where I expressed my cynicism about such role models.

“You hear all these stories about the ‘Super-Cripple’ types who make it in the world and are successful and are supposed to be our role models,” I said. “But I’m not FDR or Stevie Wonder or that girl from ‘The Other Side of the Mountain.’ Where did they get that strength? How did they overcome their handicaps? What do I do to tap into their magic that lets them cope or achieve or be somebody?”

Nobody could tell me.

And I then realized that nothing magic was going to happen. The way to do it was to just do it. Just be. There’s no magic.

I’ve also felt frustrated by such super cripples. I’ve often stated in conversations that when I was very young, all a kid with a disability had to do to get publicity was sit in a wheelchair and look cute. I had been a bit of a poster boy for United Way when I was 10 years old and for Goodwill Industries also at around that age. I have been the subject of TV news items and newspaper articles in the early 80s when I designed a special piece of communication software called VersaScan for my friend Christopher Lee who had severe cerebral palsy. The idea of a disabled software engineer developing something for another disabled person made for a unique human interest story.

But as the years rolled on, it became more and more difficult to mine publicity coins. There were paraplegic mountain climbers. Wheelchair users were an everyday part of marathon races. Paralympics and Special Olympics are well known and well covered institutions. When I was young there was no Make-A-Wish Foundation yet these days they have a monopoly on the “sit in a wheelchair and be cute” phenomena. Perhaps no one raised the publicity bar higher than NPR journalist John Hockenberry who was a paraplegic war correspondent in Afghanistan. I have been known to say jokingly “How the hell does the ordinary gimp get any ink these days an atmosphere like that?” Yet that joke thinly hides my jealousy and cynicism. I do consider people like Hockenberry a bit of a hero. I admire him for his accomplishments. But I never considered him or other disabled people of note to be role models. I never sought to pattern my life after them or draw strength from them.

Yet somehow, whether I felt I needed it or not, Stephen Hawking became not only a person whom I admired for his accomplishments, he truly became an important role model for me.

Sometime around 1995 I watched a documentary about Hawking. It gave me insights into the thought processes he uses to develop his hypotheses and theories. Because he’s physically unable to write out long equations on chalkboards, windows (like the beautiful minds do) or even with paper and pencil, he uses the strategy of visualizing the graphic representations of the equations in his mind. Those visualization techniques have given him insights into those equations that had escaped other physicists. In other words, his physical limitations were in fact an asset that made him a more insightful physicist than his peers.

This whole concept of a disability as a gift or an asset was a concept that was developing in me. I had a growing sense that in my own life, my perspective, my insights, my ability to contribute to society in my own unique ways had been enhanced by my lifelong disability. I won an award for my autobiographical magazine article “The Reunion”. It was voted by the Indiana Chapter of the Society of Professional Journalists Sigma Delta Chi as a “The Best Magazine Feature” in the state of Indiana in 1987. My simple story about coming of age with a disability was considered more newsworthy (or at least better written) than stories about famous AIDS patient Ryan White or the crash of a military jet into an Indianapolis airport hotel. Understanding that Hawking had similarly turned his disability to his advantage was a conformational data point to prove my hypothesis that having a disability wasn’t all bad.

Very shortly after seeing that documentary on Hawking, I found myself in the hospital with a severe case of pneumonia. Although I had wrestled my entire life with a shortened life expectancy and had often found myself obsessed with a fear of death, this particular incident was probably the first time I had felt I was imminently in peril. The doctors discussed with me the real possibility that I could end up on a ventilator. They noted that while it was intended as a temporary solution until I got over the pneumonia, there was a possibility that once I was on the ventilator I might not come off. At that point they started having those difficult discussions about what level of care you want. Living wills and “do not resuscitate” orders are discussed.

With my fear of death only barely under control to the point where I could live my life without obsessing over it, my natural reaction was of course to say that I wanted everything possible to keep me alive. But that standard response now had a new justification. I could say to myself and to others that if someone like Stephen Hawking could lead a productive life while on a ventilator then perhaps I could as well.

For the first time I was able to look at someone as a true role model and say “If they can do it… then so can I!” Previously I had mistakenly thought of a role model as someone whom I should attempt to equal in their accomplishments. Realizing that I could not be that person, I had rejected the whole concept of role models. What Stephen Hawking taught me was that a role model is not someone whom we should try to equal or surpass. Role models are people who empower us to be the best versions of ourselves.

This brings up the whole topic of “inspiration”. There is a trend these days among many people with disabilities to boldly and militantly declare “My purpose in life is not to inspire you!” I can understand the roots of this complaint and I partially agree with it. I think the problem is when someone says “you are an inspiration to me because of your disability” it often comes from a place of pity. People don’t necessarily understand that it comes from pity. They don’t intend for it to be. And even when it does not come from pity, it is often perceived that way by the disabled person. Not only does pity play a role in this equation… There is also an undercurrent of guilt at play. People are made to feel guilty for their good fortune. When they admire or are inspired by someone with a disability it often comes from misplaced guilt that they are healthy. There is also a sense that they underestimate their own ability to deal with such a challenge should they ever be unfortunate enough to end up with a disability of their own. I try to remind people that they underestimate their own capabilities when they feel that way.

When we hear that we are “an inspiration” it often comes across as a bit condescending. What we hear is “Oh look at the poor little handicapped kid. Isn’t it special that he even gets out of the house.” It’s a bit ironic and admittedly hypocritical that I lament the passing of the days when “sitting in a wheelchair and being cute” was sufficient to get publicity yet I decry the condescending attitude behind that faint praise.

It is the goal of every disabled person to be as normal as possible. So to be praised in a way that implies our disability, in and of itself, is a source of “inspiration” is easily rejected by us. We want to be known for our accomplishments and our abilities and not for our disability. So I sympathize with the philosophy of “I don’t exist to inspire you”.

On the other hand, in admitting that someone like Stephen Hawking is a legitimate role model and having a deeper understanding of the true purpose of a role model, I no longer tend to reject it when people say I am an inspiration to them. I don’t mind seeing myself as a role model. When people express feelings of admiration or inspiration attributed to Stephen Hawking, it doesn’t come out of a sense of “oh the poor guy in a wheelchair I feel so sorry for him”. He is admired and respected for his accomplishments in the disability is only one facet of that admiration.

It has been encouraging to me the way that people with disabilities have been recently portrayed on reality competition shows such as American Idol and Dancing with the Stars. While the judges of those events do tend to overuse the word “inspiration” in their commentary on these disabled contestants, they do also make it clear that they are forced to judge the person on their talent. They make sincere efforts not to be swayed by the disability or other inspirational natures of their personal stories.

So while I agree that I don’t exist solely to be your inspiration, if I do inspire you by my accomplishments then I have no difficulty with that. My evolution of attitude in this area is thanks to the inspiration of my role model Stephen Hawking.

One of the other interesting stories from that documentary in the mid-1990s had to do with Hawking’s position at Cambridge University. He told the story that there is an old ledger that has been signed by every member of the faculty of that institution. In 1997 he was appointed to the Lucasian chair of mathematics at Cambridge. It is a post once held by Isaac Newton. Someone realized he had never signed the ledger. So with great difficulty they placed a pen in his hand and he signed his name to that ledger recognizing himself as one of the legitimate successors of Isaac Newton. He then calmly stated “It was the last time I ever signed my own name to any document.”

I was in awe of that story. It brought tears to my eyes that the last time he signed his name was in such a momentous and meaningful way. I remember lying in the hospital in 1995 telling that story to my friend Judy. I wondered what would be the last time I was ever able to sign my name by myself. I already did it rarely. She speculated perhaps I would someday sign my marriage certificate to the love of my life. Perhaps that would be a fitting and momentous final signature.

That brings us to another way in which I admired Stephen Hawking who was married and had three children. I had long recognized that the odds of me finding a wife or being able to have a family and children would be quite a long shot. It led me to a mistaken belief that any time a woman took any interest in me, I had to do everything possible to try to direct that relationship into a romance that would someday lead to a happily ever after ending. It took me some time to appreciate that this wasn’t a good strategy. I eventually learned to focus my energy on building strong and meaningful friendships that would be fulfilling lifelong relationships even if they were not romantic or marital. My successful relationship with Judy is a testament to the success of that strategy.

But as I stated before, the goal of most disabled people is to be as normal as possible and so I admired Hawking for having a wife and children despite his disability. Although extramarital affairs, divorce, and remarriage are not typically thought of as admirable or praiseworthy, they are in fact very much normal. So when I heard that he divorced his wife Jane in 1995 and married his caregiver nurse Elaine, I had to give him an “attaboy“ for doing such a “normal” thing. He later divorced his second wife in 2006. He maintained a friendly relationship with his first wife, his children and grandchildren. His first wife’s memoir “Travelling to Infinity: My Life with Stephen” appeared in 2007, and was made into the Oscar-nominated film “The Theory of Everything” in 2014. It won the BAFTA award for Best British Film and Eddie Redmayne won best actor Oscar for his portrayal of Hawking.

As it turned out, the last time I ever signed my name was not on a marriage certificate. Instead it was a few years ago when I signed some legal documents establishing a special needs trust that hopefully will provide some financial assistance in the event of my father’s passing. I also signed power of attorney and designated medical representative authority to my dad. It includes an advanced life directive that indicates I want everything possible to keep me alive as long as I have mental capacity of some sort.

I’ve already mentioned there are similarities between Hawking’s disease ALS and my disease SMA. The parallels in our medical conditions became deeper 15 months ago when I ended up in the hospital again with severe respiratory problems. This resulted in me needing to have a tracheostomy and spending several days on a ventilator unable to speak. I found myself wishing that I had Hawking’s electronic voice. The inability to speak over several days was clearly the most difficult challenge I had faced in my over 60 years as a disabled person. I chronicled those events in my essay “Pray That They Listen to the Man with No Voice”. I still use a ventilator at night and have struggled to adapt ways to communicate while on the vent. I’m exploring various communication techniques such as open source speaking software known as CoughDrop and other assistive technology solutions.

I had not done much work in the area of assistive technology since my work in the early 1980s on VersaScan. However since that hospitalization a year ago last December, I’ve focused a great deal of my efforts on developing assistive technology not only for myself but for others. My efforts in the field of assistive technology have motivated others to take up the cause of open source solutions for the disabled. Many have said that my work in this field has been an “inspiration” to them to take up the cause of assistive technology as well. I have no problem with this. Again this is related to my concept of my disability as an asset. There are more talented engineers and programmers then I am working in the field. But they don’t have the perspective that I have as an actually user of the technology. I bring insights to the discussion that no other contributor can provide.

Stephen Hawking is yet again a role model and inspiration in this area. His iconic electronic voice is the most famous piece of assistive technology ever created. As technology has evolved, speech generation has improved to the point where the voices of Siri, Alexa, and other digital persona are every day experiences. Hawking resisted the opportunity to upgrade is rather robotic electronic digital voice to a more natural sounding one. He said that the outdated technology of his speech generation equipment had become so closely identified as “his voice” that he could not imagine changing it. To me this illustrates the intimate relationship that disabled people have with their assistive technology. It truly becomes a part of them. It’s one of the main reasons that my former software company was called “Cyborg Software Systems” and that I still go by the online handle of “cyborg5”. My relationship with my assistive technology is so intimate that it becomes part of me in the way that the mechanical aspects of the cyborg are united with its biological aspects.

I mourn the loss today of my hero and role model Prof. Stephen Hawking. But I really don’t feel very sad. He truly deserves the cliché description of “a life well lived”. Having been told in his 20s that he only had a few years to live, he worked his ass off to contribute something to the world and in the end proved the experts wrong by reaching the ripe old age of 76. I too was told I would not live very long but at age 62, I’m similarly proving the experts wrong.

This brings to mind the famous Vulcan salutation “Live long and prosper.” Certainly Stephen Hawking did so and the universe is a better place because he did.

Links of interest.