Tag Archives: disability

Inspiration Porn

(a note on the tone of this post: it is intended to be entirely sarcastic, showing both the nature and some of the problems of inspiration porn in a humorous fashion)

 

Are you an able-bodied, neurotypical person? Do you like to watch videos of disabled people doing a thing in order to feel “inspired”? Have you ever wished you could make your own video so other people could feel inspired? Well look no further! Here is a step-by-step guide to making your own inspiration porn.

1. First, you will need to find a disabled person. Perhaps you have an autistic family member, or you know someone at school who has down’s syndrome, or you have a coworker who is paraplegic. Really, pretty much any disability will do.

2. Take your camera or camcorder, and record the disabled person having a personal moment of triumph. Now, inspiration porn is best if you make it out of a genuine triumphant moment, but it does not actually need to be. It can even be as simple as your paraplegic coworker moving from their wheelchair to a desk chair, or an autistic child petting a cat and smiling.

3. Now you are ready to take that moment of triumph (or everyday, ordinary activity), and create inspiration porn out of it. Start by adding some sappy inspirational music.

4. Add words.

This step is the most important. So much of inspiration porn is how you talk about is. A dramatic voiceover is, by far, the best. However, a paragraph description or even a carefully worded title will work as well.

First, establish that being disabled makes a person “broken” in some way. You must provoke pity in your viewers and convince them that the disabled person’s life was barely worth living until this moment. Bonus points if you use the word “tragic” to describe the person, or even better, to describe their entire existence.

Then, have a rising crescendo of their personal triumph (or everyday, ordinary activity). It must be conveyed as nearly miraculous and definitely life-changing. The viewer must feel amazed that it ever happened. Go ahead and imply, or even outright state, that it would only be reasonable for the viewers to assume that the disabled person is incapable of doing the things that non-disabled people do.

And there you go! Put it up on youtube and sit back and relax. Now you, too, have removed the humanity of a disabled person, taking their personal moment of triumph (or everyday, ordinary activity) and turning it into packaged up, condescending claptrap that exists only so that non-disabled people can have feels about it. As we all know, a disabled person’s triumphs are never really about them – the triumphs are actually about how the rest of us can feel about them.

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I feel kind of defensive about this

When I see people talking about positive traits in other people, “ambition” tends to rate really highly. We’re all supposed to have ambition, and lack of ambition is seen as a personality flaw.

Of course, “ambition” always seems to be short for “career ambition.” It seems we’re all supposed to have a goal to advance in our career in some way, and if we don’t there’s something wrong with you. Something *bad* about you.

I don’t know, maybe I’m overreacting. Maybe it’s just me being twitchy and defensive, because this is an area in which I do not, at all, fit into how society tells us we are supposed to be. It’s an area that gets me judgement when people learn about it. If I’m lucky, all I’ll get is a “look.” If I’m not so lucky, I get grilled about what I’m doing instead and why I don’t have a job. I rarely want to tell these people that I’m on the autism spectrum or my history with mental illness that has kept me out of work, so it can get really uncomfortable and awkward. I mean, this is why I do not want people to ask me about work as an ice breaker.

So it’s true that I don’t have career ambition. I mean, I don’t have any career. Nor is getting a job anywhere on my short-term goals list (it’s a possibility down the line, but right now? unless something magically falls into my lap, it’s not going to happen). I don’t think this makes me bad. Nor do I think it’s cool to make “ambition” only be about careers.

Sometimes I see people who have greater struggles than I do redefine independence. Instead of independence being about not needing help, independence should be about freedom of choice. Sometimes people need help – that doesn’t mean we should be denying them the ability to have determination over their own lives.

I suppose it may be a lesser issue, but I want to do something similar with ambition. I don’t lack goals, my goals just have nothing to do with my nonexistent career. I am actively working to improve myself in all sorts of ways, and I always am. I have goals about getting more mobile, about finding more ways to contribute to my household, about volunteering at the barn where I ride, about the various crafting things I always have going on, about my writing… Honestly, you don’t get to tell me that none of that counts as ambition. Sure, it doesn’t look “normal.” Sure, things that are “just hobbies” for other people are serious business for me. Sure, I’m struggling with things most people have down by the time they’re my age. That’s kinda how it goes with me.

But it doesn’t mean I’m less than you. It doesn’t mean I’m a lazy layabout. It doesn’t mean I’m not ambitious. It just means I’m not like you, and that’s ok.

 

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More on intersections

Ages ago someone found my blog because they ran a search for “do I benefit from white privilege if I’m autistic.” I wound up noting it down in my blog topics list to get to eventually. Apparently “eventually” has arrived.

Talking about privilege is tough. I’m not good at it  – I hope to be at least somewhat better eventually, but I’m not there yet. But then, I won’t get better at talking about privilege until I actually start talking about privilege, so there you go.

To get straight to be point, before I go off on a ramble – the answer to this question is an unequivocal yes. Yes, white privilege applies when one is autistic and white. Male privilege applies when one is autistic and male. That special combination of straight, white, male privilege exists for straight, white, male autistics. Autistic people of color face an icky combination of discrimination and prejudice that white autistics do not.

Increasingly I think that privilege and oppression really needs to be talked about as an intersectional thing – when the intersections are ignored, the conversation becomes pretty much worthless. Autism sits right at the intersection of disability and mental illness. There are many ways in which this is not a nice place to be. I mean, disability is barely, if at all, seen as a social justice issue. People don’t even bat an eye when disabled people have to go down alleys, use service elevators or that sort of thing to use the the buildings all the rest of us use without even thinking about it. If you bring it up, most people will not think about it in terms of discrimination. Sure, “your entrance is in the rear” is bad for most people, but disabled people? Apparently that’s ok. Or you’ll get a place full of self-professed “egalitarians” bending over backwards to defend paying disabled people less than minimum wage.

Both disability and mental illness are treated in dehumanizing ways. I once wrote a post about wanting to see autistic representation in the media. It was about how cool it would be to see a cool, confident, likable character who happened to be autistic, and about how unlikely that is to happen. But really, in a way, that was setting the bar REALLY low. I mean, the character would almost certainly still be white, male, straight, able-bodied, and have a career. A strong, confident, likable character who’s in a wheelchair, or is too disabled to work, or could work in theory but can’t find a job because they can’t get through the interview process? No, that’s not happening. That’s so far from happening that even thinking about asking for it seems utterly and completely absurd.

Anyway. This is getting a little rambly. Intersections. I am on the autism spectrum. I am female. I have been too disabled to work for many years now (though with meds that might change). I feel incredibly fortunate and grateful and I did not wind up living on the streets – something that was probably more of a risk for me than I care to think about, had aspects of my life gone differently. I don’t drive. There are no people like me on TV, and I face a lot of judgement for being the way I am (that is, when I reveal these things to people who are relative strangers. which is rare, because I don’t like the way people look at me when they learn some of these things).

On the other hand, I am white. I am able-bodied. I can usually hide my differences from random strangers on the street, and just look “quirky” instead. There is privilege in that. No one will judge me because of the color of my skin, no one will make assumptions about me based on the texture of my hair, service people will notice my existence and interact with me without uncomfortable glances at mobility aids. So YES, I am benefiting from white privilege, as well as able-bodied privilege, speaking privilege, sight privilege, cisgender privilege and various other abilities I have that other people don’t.

So, random person on the internet, yes, you benefit from white privilege if you are white, regardless of what other privileges you do or do not enjoy. Privileges or lack thereof definitely intersect and impact one another, but they do not cancel each other out.

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Ice Breakers: An Open Letter

creative commons image by williamarthur on flickr

Dear World at Large,

We’ve been slowly getting on a little better over the past few years. I’m learning to navigate your tricky social world and you’ve been learning that I can be pretty cool sometimes.

Sometimes, though, we just don’t seem to get along. I do really try to live by your rules and your standards of how people are supposed to be, but sometimes I really need you to take a few steps towards me. This is one of those areas.

Stop asking people about their job as an ice breaker!

Seriously. I am not very good at making conversation with strangers in the first place, but this ice breaker really does not help. Not everyone works, not everyone has a job that they are happy with, and not everyone has a job that they can talk about. I know you want to think that it’s good enough since it works for most people, but it can be seriously alienating for those of use for whom it does not work. It is also an area with a lot of social baggage stuck onto it, and it can be expletive difficult to avoid feeling shame if you happen to be one of those people who does not have a job.

Sometimes people ask what sounds like a more general, “what do you do?” type of question. I would like this if it were actually general. Then people could answer with their job, or with their hobbies, or with their advocacy, or whatever else they could talk about in terms of how they spend their time. Sounds great, right? Except that I have learned that when people do this, they are not actually meaning it as generally as it sounds. They are still asking about a job.

Story time! Once, I was chatting with a stranger and she asked me the “what do you do?” ice breaker question. I chose to answer in terms of one of my hobbies, so I said that I crochet. The rest of the conversation went about as follows:

Her: Oh, you crochet for money?

Me: No, it’s a hobby.

Her: But what do you do for money?

Me: Nothing.

Her: But how do you get by? What do you do?

Me: I’m a hobo.

Eventually a friend of mine stepped in and said that I am “between jobs” and the interrogation ended. However, this should never have happened in the first place. If I choose to answer what I “do” with a hobby, please just go with it. Why is it so important to pursue the job question, even when I have clearly chosen to not answer? What is so important about knowing how I do or do not make money?

A similar thing happened another time when I was chatting with a stranger. The usual “what do you do?” question came up. This time I was blunt and simply said that I do not have a job. I was then subjected to yet another interrogation regarding why I don’t work, and am I looking, and how hard am I looking, and how long has this been going on and honestly, why is that necessary?

This is one of the reasons why I rather dread talking to strangers. The pervasiveness of this question is rather frustrating for me. I already find it difficult to talk to people I don’t know, and I already find it difficult to cope with my jobless status. Combining the two into one horrible interaction just comes across as unfriendly.

I don’t think I’m asking something terribly difficult. It can still be a job question for all those people who want it to be a job question. Just please let it be a hobby/other things I do with my time question for the people who need it to be. If I choose not to answer in terms of a job, please just go with it. Be ok with it. It can still be an ice breaker if two strangers find themselves talking to each other for whatever reason. In fact, it will be a better ice breaker, because it will no longer be excluding people who are disabled and don’t want to talk about their medical status, or otherwise don’t have a job and don’t want to be interrogated about it. It’s not friendly, it’s not nice, please stop.

Thanks

me

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Ableist Language in Social Justice Spaces: It’s Really Not Just about the Words

Sending this along because it’s good. Disability and Representation has many good words to say about the social issues of disability, this is only one example

Ableist Language in Social Justice Spaces: It’s Really Not Just about the Words.

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Special Minimum Wage

So there’s this thing. It’s called “special minimum wage.” It’s part of the Fair Labor Standards Act, and it means that employers with a “special wage certificate” get to pay disabled people less than minimum wage. Some people call it a “loophole” but it is not. A loophole implies a method of evading the law. This is explicitly written into law – specifically, section 14(c) of the Fair Labor Standards Act.

In this country, disabled people are literally second class citizens, not always even allowed the right to work for a fair pay.

Not only that, but people really defend this. There is an assumption that being disabled, especially having a “severe” disability, means that you somehow cannot work. That you’ll require lots of hand holding and oversight and it means that it would be simply impossible to pay you the way everyone else is paid. The way non-disabled people are paid.

And we find ourselves in a position of needing to prove that we can work the same as everyone else before we’re even allowed to try, and companies have a financial incentive to make sure we can’t. Not always, but often enough. It shouldn’t happen at all, but it does.

And it’s not getting a lot of attention. Goodwill, an ostensibly non-profit organization that nonetheless has executive directors making huge salaries, regularly pays disabled employees less than minimum wage. Sometimes not even $1 per hour. You cannot tell me that Goodwill would not be able to employ disabled people if they paid us fairly – that’s so ludicrous I cannot even imagine how someone could say it with a straight face.

This article talks about another aspect of the issue. Michael Grice has cerebral palsy and uses a wheelchair. He used to work in marketing and as a customer service representative – jobs that don’t require significant physical ability. But now he’s working doing menial labor for ridiculously low wage. And it’s true that his disability means he does not do that job very well. So why can’t services find him a better placement, doing a thing he would be good at?

Well, I have no idea.

But instead he’s doing a job he’s poor at for wages that would be illegal for an able-bodied person. Yet people continue to justify “special minimum wage” with noises about how we just can’t employ disabled people the way we can employ able-bodied people. Because basic accommodations or placing people in jobs that cater to our strengths is, apparently, just too hard. This is why it is so important to create a culture where it is only natural and normal to see what a person’s strengths are, and to help us use those strengths. Because right now, not only do we not have that kind of culture, we have a culture where that is simply dismissed as not worth bothering with.

Oh, but there’s more. There are organizations that do this regularly. Sometimes I see people talking about how it’s important to try to buy american-made, if you can. That we shouldn’t support overseas sweatshop labor, even if it is cheaper. Yet right here in the US, we have companies employing large numbers of disabled workers with their special wage certificate, making and selling things like tablecloths or napkins or rugs or whatnot. The companies claim that they simply wouldn’t be able to employ so many workers if they had to actually pay a fair wage. A human wage. You know, a wage that would treat us as human beings equal under the law. People keep going after Goodwill, but Goodwill is far from the only company doing this. We need to attack the law that makes this legal, not a company that is (however skeevily) benefiting from this law.

The National Federation of the Blind has this to say about all that:

Although in recent times some sheltered workshops have begun to pay disabled workers the minimum wage or higher, other shops still claim that they would be unable to continue their operations and would have to fire their workers with disabilities if forced to pay the minimum wage.  This claim is demonstrably false. In addition to the revenue generated from the labor of the worker, these entities are primarily non-profit organizations that receive very lucrative federal contracts.  Even those workshops that are paying workers competitive wages should not have trouble maintaining their operations while remaining quite profitable; indeed, many are already maintaining successful business operations while paying competitive wages.

Equal rights needs to include everyone. And while I see lots of noise about equal rights for LGBT individuals, and how we also need to remember issues of race and voting rights, I’m not seeing much about this.

People who talk about intersectionality sometimes, occasionally, remember to include disability. But mostly we’re quietly ignored, left off to the side, not talked about or mentioned or even really noticed.

This has to stop. The idea that we’re sooo hard to employ needs to stop. Forcing us into jobs we’re bad at while ignoring our strengths needs to stop. This is not ok.

It is, please pardon my language, fucking bullshit.

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Another reason why disability rights is so important

(fair warning – I am writing this post rather last minute, without the usual editing process that my posts usually get. If it seems rough or raw, that’s why)

Allow me to introduce Amanda Baggs. Amanda is an autistic self-advocate and is fairly well-known in the disability community. The above video is from her youtube channel and is one of the first I ran across when I was looking into autism. Amanda also has a number of other conditions, one of which has become life-threatening.

So, naturally, she has gone to the hospital and is working on getting necessary, life-saving treatment.

Key phrase there. “working on.” Not just getting the treatment, working on getting the treatment.

Why is that?

Because she and her advocates are finding themselves in the position of needing to fight various doctors (and med students) who think that she would be better off dead.

I’m not exaggerating.

On her tumblr Amanda has been writing about her experiences with doctors and the hospital. In one instance she was consulting with a specialist. The specialist kept saying that instead of getting the necessary (and minimally invasive) treatment, she should look into “alternatives.” Her DPA spelled out, explicitly, that “the alternative” is, in fact, death. Her condition is life-threatening. She needs treatment.

Now, I want to make this next part really clear. The doctor, in fact, agreed with this assessment. Yes, the alternative is death.

After doing so, he continued to push for “the alternative.”

In essence, he was saying that she should seriously consider dying as a better option than not dying. That maybe her life isn’t really worth living.

THIS IS NOT OK. Seriously. I shouldn’t even have to say that. Amanda should not have to fight her doctors just to convince them that, actually, she’d rather keep on living. It’s bad enough that we have to fight just to be allowed to go to school. Fighting to live is supposed to be about getting the treatment and fighting whatever illness or condition is threatening your life. It is not supposed to be about fighting your doctors just to get treatment at all.

The only person who gets to decide if Amanda’s life is worth living is Amanda. Clearly, Amanda is quite confident that she wants to keep on living. THIS SHOULD END THE DEBATE. Actually, there never should have been a debate in the first place. No one should question this, ever.

Now, things are getting better for Amanda. She is well known, she has her DPA, people are pressuring the hospital to, you know, do what they’re supposed to do. However, not everyone is so lucky. This is something that has happened to people in the past. It is happening to people now. It will happen to others in the future. We really need to make this stop.

What Amanda needs:

Make noise. At some point I really should write up a defense of the “slacktivism” thing that gets so much scorn, but for now I’ll just say – I believe in noise. Sharing and showing support are useful things to do.

From webmuskie‘s tumblr:

It may be time to add angry phone calls to the hospital to the prayers come Monday morning. (the switchboard # is 802-847-0000 FYI, though you won’t be able to find her in the directory for reasons of privacy. Not a problem because come Monday the hospital administration will surely know who we are).

Fair warning – if you go that route, she is apparently checked in under a different name, which has not been shared with the public. The hospital administration knows this.

What we all need:

For disability to stop meaning “less.”

For everyone – including and especially doctors – to stop thinking they get to determine if other people should keep on living.

And, to throw in a quick line about it being Autism awareness month – this is why awareness isn’t good enough. We’re not being greedy or uncooperative or whatever when we say we need more. We really do need more.

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Cut it Out: An Open Letter

Dear World At Large,

Stop using “autistic” as an insult.

Maybe you claimed that a certain politician must be autistic. Or maybe you used autism as a metaphor to describe the problems of a particular country. Or maybe you laughed at someone and said they “look autistic.”

When you use the word “autistic” as a way to insult someone, the message received by those of us who actually are on the spectrum is not that the object of your insult is bad. It’s that being autistic is so completely awful that it’s a good way to belittle someone. It’s saying that autistic is synonymous with stupid, or unworthy, or rude, or whatever else you mean to imply. It’s showing what you think autistic people are like, as well as showing that you think it’s so inherent to autism that it makes sense to sling the word around as a way to insult people.

Of course, this is nothing new. People have been taking their prejudices about various groups of people, loading those prejudices onto certain descriptive words, and then hurling those words as insults for a very long time. Words like retarded and gay have also been used in this way – and all too often still are. It’s a problem.

Personally, I find it dismaying that instead of reducing the number of words we’re doing this with, we’re increasing them.

Of course, I say words, but it’s not just about the words. It’s about the people. Real, autistic people who are dynamic and interesting and strong and so much more than a collection a deficiencies, being used wholesale as a way to insult people. It reduces our entire reality into little more than a way to say “you’re bad.” It may be a by-product of the fact that it is socially acceptable to blatantly mock and belittle disabled people, but I maintain that neither of these things are in the least bit ok.

I have Asperger’s. I’m on the autism spectrum. I have friends, a significant other, hobbies, skills, interests, humor and so much more, and I am NOT an insult.

Thanks
me

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“See the person, not the disability”

“See the person, not the disability” is a phrase I see around sometimes, often said by disability advocates. I believe their intent is to encourage people to not judge a person on their disability, but see them as a whole person. I will admit, there certainly is a problem in our society where many people will see someone with a disability, and simply stop there, failing to see anything else.

That said, I don’t like this phrase.

First of all, and most glaringly, it sets up a false dichotomy. It implies that we must see either the person OR the disability, but we somehow cannot see both, and that if we are seeing the disability we must, therefore, not be seeing the person. How insulting. Now, as I said, I do recognize that there is a problem with just this sort of thing out there. However, I do not believe the solution is to see the person instead of the disability. I believe the solution is to see the person as well as the disability. Disability is real, it’s there. Pretending that it’s not there does not actually help anyone.

Personally, I cannot be separated from my Aspergers. It is simply impossible. So to view me as somehow separate from my Aspergers, seeing me instead of seeing Aspergers, is to, in fact, fail to see me. By this I don’t necessarily mean that I have to go announcing that I’m an aspie to everyone I see (though personally, I do tend to be very open about it), but more that I have a large number of quirks and oddities that can be attributed to my being on the autism spectrum. Whether a person conceptualizes them as part and parcel of my being an aspie, or simply as a bundle of quirks does not matter so much as the fact that they are there, and ignoring them (seeing “me” instead of them) simply means that they are failing to see who I really am. This is especially problematic given that many of my oddities have a not-insignificant impact on how I interact with people.

Random story time! Not long ago I went to a restaurant with a few other people to have some social time. We headed to a table against a wall, but then two of the people I was with slid into the seats by the wall, leaving me to sit with my back both to people and to a flow of traffic (servers, people moving around, etc). For this to make sense you’d have to know that I really hate having people behind me. In a restaurant I make a point to sit with as few people behind me as possible, and tolerating people-flow behind me is more or less impossible. I am embarrassed to admit that at the time, I simply froze and not-quite-panicked as I tried to sort through my options. Sit where I know I won’t handle it? Go somewhere else to sit? Ask if I could please sit where one of them were sitting? One of the two people then noticed that I was looking a bit freaked out and asked if I’d like to sit where they were sitting, and I gratefully accepted. I do very much wish I had managed to handle the situation more gracefully and have since been trying to figure out templates on how to handle that sort of thing if it happens again in the future. However, it does rather illustrate that you can’t really see me without also seeing my strangeness, at least in anything but the most superficial of interactions (and sometimes not even then). It is simply impossible to see some non-existent idea of “me” without also seeing my aspie oddities, so really, don’t even try.

Ok, now I want to talk a bit about that graphic I used at the top. Not only is the wording a problem, but so is the picture. We have an able-bodied person standing (presumably what we are supposed to “see”), with people in wheelchairs as shadows (presumably what we are not supposed to “see”). Here’s the thing – everyone is a person, regardless of their ability to stand. I think they are trying to say person vs. disability with that graphic, but what they are actually saying is able-bodied person vs. person in a wheelchair. Apparently “person” directly means able-bodied/not-disabled. Seriously uncool. Just to hammer it in more (hopefully excessively), imagine if it were another group on that graphic. Such as “see the person, not the color” showing white people with shadows of various ethnicities. That would never be ok, because it would be implying that “person” means “white.” Similarly, implying that “person” means “able-bodied” shows prejudice and is not ok.

People are going to see me. That includes the fact that I am an aspie and all of the ways that makes me who I am, from the frustrating to the wonderful.

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Melora

I have a confession to make. I’m a nerd. One of the things I’m nerdy about is Star Trek. Even now, years after they have aired, I like to re-watch the various Star Trek series that I particularly like. Of course, I say “confession” but I’m not actually ashamed of it. I like Star Trek! woo hoo!

Anyway. I’ve been re-watching Deep Space 9 for the umpteenth time, and I want to talk about one of the episodes. Specifically, an episode that dealt with disability.

In this episode, we have a character named Melora. Melora comes from a planet with very low gravity, which means that she finds “normal” gravity extremely challenging to cope with (and yes, ST totally ignored things like circulatory problems and just stuck with mobility issues). She needs a wheelchair or a special mobility suit doohicky along with various accommodations in order to function.

All of which is fine and dandy, but what caught my interest was the presentation that while she has a disability in the context of normal gravity, she has particular abilities when you change that context. Due to where she comes from, she is far more functional than everyone around her when the gravity is turned low. Of course, she wants to be able to function in the world most people are in, which means she has to cope with a gravity that is too high for her. It’s either that or don’t leave her planet at all.

However, in the episode she is suddenly offered a cure. She could be “fixed” if she wanted to be, she could have her body changed so that she could handle the gravity that most people consider normal. However, she also has to contend with the fact that it’s not as straightforward as just being a fix. She would lose something in the process. She would never again be able to go home beyond short visits. She would completely lose her affinity with low gravity environments.

In the end, she decides that the price is too high to pay and she would rather stay the way she is, challenges and all. Personally, I really liked this model of disability, and I like the idea that sometimes a change in perspective can make the difference between ability and disability. It matches my perspective on ASDs, so it was nice to see.

Of course, there are requisite disclaimers. Melora works as one model for some disabilities, but it does not work for all of them. In some cases, trying to apply this model would be incorrect or even harmful, like the myth that blind people develop a “sixth sense.” There are also people who disagree with me regarding ASDs, people who view their own spectrum disorder as simply a collection of problems, with no accompanying abilities. While I certainly disagree with them, they have the right to self-define in the way that works best for them.

In the end, you cannot have one model or narrative for disability, as disability is not a monolith. What works for one will not work for another, and it is very very important to remember that. But Melora worked for me, and I found that pretty cool.

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