Stephen Hawking eulogies and ableism

Great Debates
1

A friend linked on FB to this Yahoo article in which people are denouncing some of the tone and content of the coverage of the death of Stephen Hawking.

Typical example: “Today’s a day to avoid people. It’s too difficult seeing all of the (expletive) “he’s free now!” around Stephen Hawking’s death when for me, a wheelchair represents the freedom to experience grand events in life with my family, and an overall decrease in pain. #Disability”

Another: "I mean, he did pretty amazing stuff but it wasn’t amazing because he had ALS and used a wheelchair and AAC. Those are just things.

The amazing stuff Stephen Hawking did was amazing because he thought and said amazing things."
As a general policy, I don’t like saying things that imply that I am wiser about an issue than people who are vastly more knowledgeable about it than I am… for instance, because they are actually living it. But, I gotta say, I feel like these complaints are somewhat off base.
(1) First of all, it’s certainly true that there’s some conflation going on. When people say “Stephen Hawking is free of his wheelchair”, what they mean is “Stephen Hawking is free of the horrifying crippling disease he tragically suffered, of which his wheelchair was an everpresent reminder”. In fact, his wheelchair (and the amazing technology in it) was something that helped him live a life despite the disease. So saying he’s free of his wheelchair is kind of backwards, in that it feels like it’s putting the wheelchair on the same team as the disease instead of the opposite team… but everyone understands that! Everyone realizes that the real burden was not the wheelchair, it was the disease. And I’d bet every dollar I own that there are certainly times when even disabled people themselves look at their wheelchairs and feel anger/depression/rage/whatever, rather than directing those feelings at the specific disability they suffer.

In this age of pluralism and openness, we’re very used to using our language in a way that doesn’t make it sound like any characteristic of a group of people is objectively better or worse than any other. And I think that’s a good and correct policy when it comes to sex and race and many other immutable human characteristics. But having ALS is unfortunate. It’s bad. If I got to wish whether my child either would or would not have ALS, I would choose “would not” in a heartbeat. People with ALS are every bit as human and valuable and deserving of rights and so forth as everyone else… but that doesn’t mean that ALS itself is value-neutral.
(2) If Stephen Hawking were a woman and people kept saying “she accomplished amazing things, despite being a woman”, that would be (obviously) ridiculously sexist. If he was a black man and people kept saying “he accomplished amazing things despite being black”, that would be racist. (Well, it’s a bit more complicated than that, because of racism/sexism they may have faced, but that’s outside the scope of this thread.) Are those any different from saying “he accomplished amazing things despite his disability”? I’d argue that they are. Unlike race/sex/sexual orientation, a disability, kind of by definition, makes it HARDER to do things. Anyone who, say, wins the Oscar for best picture has does something impressive. It’s very very hard to accomplish that. If someone does it from a wheelchair, it’s even more impressive, because they had to do everything the able bodied winner did, but face a bunch of additional obstacles. Why is that not something that should be acknowledged, recognized and celebrated? I mean, sure, the tone of that acknowledgement could be condescending or obnoxious or any number of other things, but should we just pretend that’s not the case at all?
thoughts?

2

I really don’t know.

I think it’s clear that he made a smart career choice.

If Hawking had had a long and celebrated career as a football player while he had ALS, I think the point you’re making would be 100% correct. I think that in reality your point is some significant percentage correct but possibly not all. I’m not sure.

3

I have to admit that, despite being rather pro-social justice, ableism is the one I find most problematic. Not because it doesn’t exist: it definitely does, and I’ve faced it. But the problem is indeed that it’s not the same as the others. Disabilities are flaws. They are undesirable aspects that those of us who have them wish we did not have. As such, the rules have to be different. Of course, this is true for any -ism, to some extent, but it’s especially true for ableism.

Stephen Hawking very much made it clear that he would rather not be disabled. And we know the struggle it caused. So it makes perfect sense to be happy that he’s no longer having to deal with this.

Sure, maybe using the wheelchair as the symbol for his difficulties hits close to home for some people. But, even then, wouldn’t you rather NOT be in a wheelchair? So then why is it offensive that other people also wish that you weren’t in a wheelchair? Because that’s the only implication here.

I know that I myself do get tired of hearing people say stuff about wishing I’d get better, but there’s a difference between getting tired of it and finding it offensive. And when I see people who have things much worse than me, and people talk about how they are now free, it doesn’t bother me.

I do not believe this maxim about how everyone is always getting offended these days. I hate that concept, because it negates the very real experiences of these people and their very real emotions about those experiences. But this is one area where, being involved in it myself, I do think that the outrage is misplaced. I can’t say they’re wrong for feeling how they feel, but outrage tends to go a step further and treat those who made you feel that way as having done something wrong.

And, despite trying to understand with their point of view, and my own related experiences, I just can’t do it. I can understand their anger, but I can’t agree with their reasoning.

4

Whenever I step into a conversation about this sort of issue, I feel the need to lead with the declaration that this is just my thinking on this at the moment; I’m happy to hear, honor, and be influenced by the thoughts of others.

When Hawking died, and I saw cutesy memes of him floating through space removed from his wheelchair, they seemed clearly in poor taste. Particularly because they are conceived by and for people who are not Hawking. They project their creators’ own feelings about not wanting to be in a wheelchair onto Hawking, and don’t at all take his experience and emotions about his wheelchair into the equation.

Like recent books/memoirs by parents of Autistic children, they are by, for, and about the feelings of the ‘normal’ authors, with very little concern/consideration for the actual subject of the work.

At the same time, I think it’s understandable and a sign of compassion to feel sympathy for someone with a debilitating disease or injury, and to express a wish that they were free of it.

If we didn’t have cool wheelchairs and speech devices, and Hawking was just bedridden and unable to communicate for decades, would it still be wrong to wish him freedom from that?
Also, the concept of “death freeing us from Earthly troubles” is a pretty common cultural touchstone, and while I personally find it a little distasteful, I think it’s a mostly universal feeling and coping method. If you’re going to declare that it’s inappropriate to claim that Hawking is now “free”, I think you also have to agree that it’s inappropriate to declare that your long-suffering deceased relative is “free from pain”. “No, sorry, aunt Sally’s just dead. And if she died in pain, well she’ll probably float through the cosmos in pain too. The pain was part of who she was.”

5

I can see taking offense at something along the lines of “he’d be a nobody if it weren’t for ALS”.

All this other stuff is utter rubbish. Ohhh you are SUCH a good person for being offended that he was “freed” from his wheelchair. Puhleeze.

6

Autism and ALS bring, I think, different issues to this discussion - not different ways of looking at the same issue.

I have never heard and can’t imagine hearing “I’m glad I have ALS, I’m better off with it than without” - but that type of statement is a common thread among at least a significant proportion of autistic people - probably not all.

That’s not at all the same as “ALS is damned inconvenient, but don’t pity me, I get along fine” - which I would not be surprised to hear.

7

From what I’ve read, some people are objecting to the tone of, “oh, wow, it’s so impressive that someone in a wheelchair could still THINK so well,” in a “oh, wow, Barack Obama’s is so articulate!” kind of way.

8

But merely thinking is not what he accomplished. He had to put in a lot more effort to communicate those ideas to people. Everything he does is incredibly slowed down. And he had to keep in good spirits to actually do it, and not get depressed by his disability.

There is definitely more of an accomplishment doing what he did with ALS than without, even though what he did is still quite significant on its own.

9

Ableism is no more or less than presuming to understand or know another person’s situation better than they do themselves.

It often surfaces in the ridiculous assumption “If I can do it, so can you”. Or in “If you don’t X, then you’re not pulling your weight”.

It also commonly happens in sort of… I don’t know, can it be called the opposite direction…? Like the hilariously common trick of talking louder to the person in the wheelchair, or assuming that a person’s life is terrible when it’s far from terrible, or (a “special favourite” of mine) talking about a person who’s in the room as if they can’t understand what’s being said or as if they couldn’t possibly mind having their private life made public.

But in each case, ableism is simply the disrespect of presuming to know some aspect of a person’s life - usually either faulting them for not “measuring up” to normal expectations or patronizingly assuming that they’re far less able than they really are.

10

I dunno. He had a pretty wry sense of humor, and participated in several Zero Gravity flights.

11

missed the edit window. OTHO, he was an avowed atheist who explicitly said he did not believe in an afterlife. That death was final. But still, I think the imagery is not necessarily in poor taste.

If you’re trying to convey: Hey, he’s finally happy! Poor taste.

If you’re just noting that space was his domain, then not in poor taste.

12

The thing I find most inspiring about Hawking is that he got out and did stuff - he could have just stayed in his office, doing his work, but he also got out in public, in front of a camera, and did stuff. He tried to make what he did understandable to the general public and wound up with a best seller. He appeared on Star Trek, voiced himself on The Simpsons, had a cameo with Monty Python. None of that could have been easy for a man who required someone to simply turn him over in bed or get him arranged for the day in his wheelchair. There are able-bodied people who never leave the city they were born in, and he was very much disabled but visited every continent on Earth - which is damn impressive because the logistics of getting him those places and keeping his physical body safe and cared for were no doubt daunting.

I admire the intellect that led him to the Lucasian Chair, but I also admire the spirit that drove him to have a life despite his illness and disability. He was supremely unlucky in having ALS. He was supremely lucky for having numerous opportunities in his life he was able to take advantage of in order to have a long, full, and interesting life.

13

I imagine many disabled people are frustrated that people think of them primarily in terms of their disabilities. So that if they accomplish something it’s not “hey, look at what this guy accomplished”, but “hey, look at what this disabled guy accomplished”.

That said, I’m not sure what can be done about it. If people just ignored that the disabled people are accomplishing things in spite of their obstacles that would probably be frustrating to many disabled people too.

Bottom line is that you can’t make everyone happy, and sometimes you can’t make anyone happy. You do your best and hope for the best.

14

I am pretty sure what can be done about it.

It’s true that thinking of people primarily in terms of disabilities is not good. It’s also not good to ignore the fact that something they accomplished was despite significant obstacles. Those may seem to be opposing viewpoints, and it may seem as if we’re stuck with an awkward dilemma in what to say - but we’re not. In fact, both of those viewpoints are the same one, and choosing between them is a trap.

Those are both reasonable-sounding answers to “How should I make my assumptions about someone with a disability?”. But the answers are wrong because the question is wrong.

A disability is a deeply personal thing. It is rarely a neutral fact, for the person who has it.

It’s often OK to make assumptions about neutral facts. For example, I don’t have a TV. Often, someone will ask me “Did you see [that show] last night?” They assumed I had a TV - I say “I don’t have a TV”, they say “Oh”, and that’s that.

Sometimes we can make what seems like a neutral assumption, but it turns out badly - like if I see dog bowls in your house and ask what kind of dog you have, and actually your dog died last night, and then you feel bad and then I feel bad and then you tell me “No, you couldn’t have known, it’s not your fault”.

But… there are situations where it’s clear from the start that you can’t make a neutral assumption. You don’t just start talking about someone’s sex habits as if you know all about it. You don’t meet someone for the first time and assume you already know how they voted in the latest election. And… you don’t act as if you already know how a disability affects someone.

No deciding whether to be too patronizing or too dismissive. No giving them the benefit of the doubt - because if you have a doubt, you have no justification for speaking in the first place. It’s personal stuff, it’s not neutral facts. If you want to know, ask.

15

I really wish I had seen this thread earlier today instead of 2 minutes before I was walking (no pun) out of the door. This is a very lightning rod issue for me and I’ll have more to say later. Needless to say, some of what I read here makes my head shake. Ableism is absolutely different than other ‘isms’ and that is, in part, what makes it such an insidious, silent, obstacle-ridden problem to ever not even effectively reduce and one day eliminate but just to open and honestly discuss as such an issue. Part of that discussion would be about who contributes to ableism and more importantly why they contribute to it.

Ok, really gotta run (again, no freaking pun haha). Will have more to add to the discussion later.

16

Can you give an example of the type of assumption you’re thinking about? I mean, if I was hanging out with a group of people one of whom was in a wheelchair, and we were discussing what activity to do as a group at a future date, I would start with the assumption that the person in the wheelchair would be incapable of activities such as strenuous hiking or rock climbing. I would certainly be willing to have that assumption corrected and would hopefully be understanding about it if that happened… but I feel like starting from that assumption is less dickish than making no assumptions at all, even very common-sense-seeming ones, and forcing the person in the wheelchair to either be left out or speak up and point out what should be obvious.

17

A quick example is, knowing nothing else about a person other than the fact that they rely on a wheelchair, assuming that they are incapable of anything resembling normal sex. These assumptions are made before any interactions between them and the disabled person even begin. So the assumptions cause the interactions to be colored from the beginning, anything but neutral.

18

Many, many people see the wheelchair first and the human being sitting in it a distant second. Its why seemingly obviously unneeded mistakes or treatment towards the disabled person occur. We all look the same to them. So just as a 70 year old woman in an electric wheelchair might need help getting thru a door, so does the 25 year old male paraplegic athlete.

19

Well… except that if someone’s legs don’t work they could still use their hands and arms for climbing… Really, it depends on the person, and I think that’s maybe what Ambivalid is getting at.

I guess if someone is a quadriplegic that’s a reasonable assumption, but if their arms work fine an even less dickish answer might be to ask “Is rock climbing something you can do?”

The thing is, most able-bodied people really don’t know how a disability affects a person, or how variable disabilities can be. A lot of blind people actually do have some usable vision left or in other words aren’t completely blind, many deaf people have some sound perception just not enough to understand speech and even if not might still enjoy music because of their perception of vibrations, paralysis can be partial or complete, it may affect one limb or all, or affect each limb differently, there are blind, deaf, paralyzed, and amputee mountain climbers… and some people who are blind really do have no vision whatsoever, some deaf people really do have no sound perception, and while some people who use wheelchairs are athletes some are also as physically helpless as Stephen Hawking was.

I used to encounter some of this with my spouse when I was setting up medical stuff for him (which I did not because he was disabled but because I was better at doing it) - some people just assumed, on hearing “spina bifida” he was paralyzed and retarded (and some also refused to believe I was actually a wife and not a paid caretaker). Others - which I would file under “much less dickish”, would ask “what accommodations does he need?”

20

(my bolding)

My thoughts are the italicized examples are all the exact same thing. And that is these people accomplished what they did despite doing it in a society that is absolutely not set up for them to succeed. Of course, all three will face different sorts of obstacles and struggles but the underlying truth for all three is exactly the same. It’s not the disability that causes struggles being successful, it’s navigating a very non-handicap accessible world that does. Just as it’s not the color of one’s skin that can make success more difficult, it’s the fact that the color of their skin is not part of the patriarchy of success in our country. Just as a successful woman isn’t noteworthy because she has a uterus, it’s because she’s successful in a (white) man’s world.