"Once More, With Feeling"

Picture of an old TV set with four disability symbols on the screen

Spoiler alert, and while we’re at it, nerd alert …

This post is mainly a bit of self-indulgent fun.

A little over four years ago, I posted a comparison between two ways of parenting kids with disabilities, and Joyce and Giles’ approaches to “parenting” a vampire slayer on the TV show Buffy The Vampire Slayer.

Just recently, I re-watched one of my favorite “Buffy” episodes, “Once More, With Feeling,” which…

(SPOILER!, SPOILER!, SPOILER!)

… is a musical episode in which the main characters are under an enchantment that makes them involuntarily sing about the many difficult secrets they have been keeping from each other.

The songs sampled below are about several things, some of which have nothing at all to do with disability, even by analogy. But my “disability thinking” radar kept on pinging, so I thought I’d share. If you haven’t seen the show, read on or don’t, it’s up to you. But really this is going to be best for readers who are are familiar with Buffy The Vampire Slayer and have seen “Once More, With Feeling.” So …

(SPOILER!, SPOILER!, SPOILER!)

Depression

In the episode’s opening song, Buffy essentially sings about depression:

Every single night, the same arrangement,
I go out and fight the fight.
Still I always feel this strange estrangement,
Nothing here is real, nothing here is right.

I don’t want to be
Going through the motions,
Losing all my drive.
I can’t even see
If this is really me
And I just want to be … alive!

Later the story, what Buffy is experiencing gets even more clear. And what I especially like is that her song includes how part of depression is having to cope with how others react to it, and how we end up worrying about that while we’re coping with our own emotions:

I touch the fire and it freezes me.
I look into it and it’s black.
Why can’t I feel?
My skin should crack and peel!
I want the fire back!

So one by one, they turn from me,
I guess my friends can’t face the cold.
But why I froze, not one among them knows.
And never can be told.

And near the end of the story, Buffy lays it all out and shares how she’s really been feeling, whether her friends can handle it or not:

Life’s a show, and we all play a part.
And when the music starts.
We open up our hearts.

Where there’s life, there’s hope.
Every day’s a gift.
Wishes can come true.
Whistle while you work.
So hard. All day.

Give me something to sing about!
I need something to sing about!

Still my friends don’t know why I ignore
The million things or more
I should be dancing for.

All the joy life sends.
Family and friends.
All the twists and bends.
Knowing that it ends.
Well, that depends …

Unexpected Love

Tara’s love song for Willow has a layer of darkness, but the first part of it speaks beautifully about finding love and kinship when you thought you might never find either. This is something people with disabilities often experience, especially those of us who grew up with disabilities. Internalized ableism is powerful:

I lived my life in shadow, never the sun on my face.
It didn’t seem so sad though, I figured that was my place.
Now I’m bathed in light. Something just isn’t right.

I’m under your spell.
How else could it be, anyone would notice me?
It’s magic, I can tell.
How you set me free, brought me out so easily.

I saw a world enchanted, spirits and charms in the air.
I always took for granted, I was the only one there.
But your power shone, brighter than any I’ve known.

Standing In The Way

Giles, who is Buffy’s “Watcher,” her trainer and teacher, has over several seasons also become Buffy’s surrogate father. In his song, he worries that his deep desire to smooth her very difficult path has caused him to hinder her full maturity and independence. It’s something I know my parents struggled with at times. And I suspect a lot of parents of kids with disabilities will find Giles’ feelings familiar:

You’re not ready for the world outside.
You keep pretending, but you just can’t hide.
I know that I said that I’d be standing by your side,
But I…

I wish I could say the right words to lead you through this land,
Wish I could play the father, and take you by the hand.
Wish I could stay … but now I understand
I’m standing in the way.

I wish I could lay your arms down, and let you rest at last.
Wish I could slay your demons, but now that time has passed.
Wish I could stay … your stalwart standing-fast,
But I’m standing in the way.
I’m just standing in the way.

So I’m curious … what pop cultural artifacts resonate for other disabled people? Which TV shows, movies, or songs give you insight into the disability experience or reflect how you feel about it? Share if you like in the comments below.

Click here for all the lyrics to “Once More, With Feeling

What Defines Members Of The “Disability Community?”

Five different-colored stick figures representing five types of disabilities

The do we mean when we talk about the “disability community?”

Most obviously, we are talking about disabled people. Here is my own definition of what counts as “disabled”

“If you have a physical or mental condition that you have to think about and plan around every day, then you are disabled.”

But, if I have absorbed one thing over the last several years of disability blogging and immersion in online disability culture and activism, it’s that being one of the disabled population isn’t the same thing as being a part of a disabled community.

Sometimes, when people refer to the “disability community,” they do actually mean the total population of all disabled people, however they define disability. But often I think what we are really talking about is people with disabilities who have a certain approach and orientation to disability as an experience , and towards other disabled people. When we say, “The disability community is concerned about ___,” what we usually mean is that a group of disabled people with some degree of unity and common viewpoint have an opinion about something … not that all disabled people think a certain way.

Now, as soon as you start talking about who is and isn’t part of a “community,” you sound like you are making judgments and encouraging elitism. Maybe that’s unavoidable. All I can say is that I try to keep that to a minimum. Being part of the disability community isn’t necessarily a good thing, and not being involved in it isn’t necessarily bad or inferior. It’s just a different way of being with your disability.

So, what makes a person part of the “disability community?”

First of all, there are a few criteria that are often implied, but I want to reject.

• You don’t have to know or “follow” certain famous disability activists, celebrities, or online “influencers.”

• You don’t have to be a liberal, a Democrat, or a progressive.

• You don’t have to adhere to a strict list of approved positions on key disability issues.

• You don’t have to use only certain approved words and phrases to talk about disability.

Some people may treat these as requirements, but I don’t think they should be. But I do think it’s useful to note some of the common characteristics of disabled people who are in the disability community … in addition to actually having disabilities. For example:

• Whether or not they actually use the word “disabled” or “disability,” they are comfortable identifying themselves in some way as disabled. They don’t insist that their disability is unimportant.

• While they may work to improve their general health and everyday capabilities, they don’t spend much time trying to hide, lessen, or cure their disabilities.

• They know other disabled people and are interested in meeting others. They regularly share and discuss their disability experiences with other disabled people.

• They feel some kind of instinctive emotional kinship with other disabled people.

• They recognize that at least some of the difficulties of living with disabilities come from external factors, such as ableism, discrimination, inaccessibility, and bad policies and practices.

• They are open to the idea of working with other disabled people to make life better for all people with disabilities, not just to solve their own individual problems.

• They have an interest in connecting with other disabled people, disability advocacy groups, and disability culture … in person or online.

• They recognize that to at least some extent, people with many different kinds of disabilities share common experiences, common priorities, and the same basic human rights.

• They have definite opinions and beliefs about disability and disabled peoples’ place in society. These opinions may evolve, and sometimes change, but they are always an important part of their thinking.

How do you describe being a member of the disability community?

A note here about non-disabled people …

My feeling is that family, doctors, therapists, teachers, counselors, and other service provides aren’t part of the disability community unless they have disabilities themselves. Otherwise, the term ally should apply … and that label shouldn’t be treated lightly or like some kind of second prize. Allies are important!

A Poll I’d Like To See

Illustration of poll question boxes with a red check mark

I think it’s time for a new opinion poll of the disability community.

One of the frustrating things about disability writing, social media, and activism, is never being sure how much of the “disability community” is actually interested, or would even agree with what we’re saying and doing.

As disability activists, we take a lot of stands and priorities based on our own convictions, but backed up by rather vague ideas and instincts we have about what the disability community looks like and how most disabled people actually think. We may have sound ideas about what is important in disability policy and social progress. But we know surprisingly little about how many of our fellow disabled people actually share our views.

The Gallup organization did an opinion poll of disabled people many years ago, but I haven’t seen anything quite as thorough since. And as I recall, that poll didn’t ask much about how disabled people think about their disabilities, or really explore the differences in perspective that may be tied to different kinds of disabilities, different lengths of time having disabilities, and exposure to “disability culture.” So here are some poll questions I would like to see asked of the broad disability community, by professional pollsters who know how to gather accurate data on public opinion.

What questions would you ask if you could design a comprehensive disability opinion poll?

What kind of disability do you have?

1. Cognitive
2. Physical
3. Mental / Psychiatric
4. Sensory (Visual / Hearing)
5. Autism
6. Chronic Illness / Chronic Pain

How did you become disabled?

1. Born with obvious, identifiable, and more or less lifelong disabilities.
2. From illness or accident.
3. Always had a disability, but just recently identified or explained.

How do you locate your disability?

1. It is very specific to one two aspects of my body, mind, or functions.
2. It involves most of my body, mind, or everyday functions.

How do you experience your disability the most? (Rank from least to most relevant to you)

1. As a medical condition requiring treatment.
2. As a social condition requiring legal protections and work against prejudice.
3. As a practical problem requiring accessibility and accommodations.
4. As an economic problem requiring financial opportunity and security.

How old are you?

Which state do you live in?

What kind of community do you live in?

1. Urban
2. Suburban
3. Rural

What is your annual income?

What best describes your employment status?

1. Not employed for pay
2. Work, but not for pay
3. Work, but for less than minimum wage
4. In a sheltered workshop or regulated work program
5. No outside work, just personal self-care and day to day chores
6. Part time work for pay
7. Full time work for pay
8. Occasional or seasonal work for pay
9. Freelance for for pay

Is it a current desire / priority for you to work for pay more than you do?

Do you rely on government benefits for any of your monthly income?

How do you pay for health care?

1. Private health insurance
2. Medicare
3. Medicaid
4. Mainly out of pocket, through fundraising, or using free care when available

What is your living situation?

1. In my own home / apartment, without help.
2. In my own home / apartment, with regular help.
3. In my parents’ home.
4. In a nursing home, group home, or other regulated facility.
5. With roommate(s)
6. Don’t have a regular home / shelter.

Are you married / living with a romantic partner?

How do you get around your community?

1. Drive
2. Walk / wheel as a pedestrian
3. Taxis or public transportation
4. Specialized disability transport
5. No regular means of getting around

How long have you had your disability?

Do you participate in disability conversations and reading online?

Do you have friends who have disabilities?

Do you participate in any kind of disability issue advocacy, in person or online?

And of course it’s always useful and important to ask some demographic questions …

How do you identify yourself in terms of race and / or ethnicity?

How do you identify yourself in terms of gender?

How do you identify yourself in terms of sexuality?

How do you identify yourself in terms of religion?

How do you identify yourself in terms of politics or ideology?

How do you identify yourself in terms of social and / or economic class or status?

Disabled People Explained: Why we say we don’t want to be cured

Few ideas are as important to disabled people, and so widely misunderstood, as the assertion, “We don’t want to be cured!”

To many, if not most non-disabled people … and quite a few disabled people too … this seems bizarre. Either there’s something wrong with us that we feel this way, or we like the "special" feeling and privileges disability supposedly gives us, or it’s a lie we tell for some political or rhetorical purpose ... maybe to pump up the disability community or focus attention our material goals.

Two stick figures with overlapping speech balloons over their heads

So do we really mean it when we say we don’t want to be cured?

Yes, Sort of.

First of all, for some of us it’s a hard “Yes!” We literally do not want to be “cured." We don’t want our disabilities “fixed.” If a magic pill was available and affordable, we wouldn’t take it.

But I think for most of us, the feeling is genuine, but not quite as specific as the words suggest. Most of the time when we say we don’t want a cure, we mean that we are so used to our disabilities that we have a hard time imagining ourselves after a purely hypothetical cure. Many of us would appreciate some specific improvements or relief in certain aspects of our disabilities, such as less pain, more stamina, or maybe a fix for one particular impairment that would be nice to leave behind, even if other impairments remained. But we can’t really even guess who we would be without our underlying conditions.

I would love to be able to breathe better than I do. But I can’t fathom who I would be, what kind of life and even personality I would have, if I were 6 feet tall instead of 4, or didn’t have a deeply curved spine, or had a thicker, more solid, stronger physique. Besides, my disabilities aren’t the kind you can really cure, or even imagine curing. For me, a cure would have to entail more than repairing a malfunctioning part. It would be more like complete replacement of myself, and that's a weird thing to think about, much less wish for.

It's not like that for all disabled people. People who have been recently disabled, or who have very specific and isolated impairments, often feel that their disabilities really are just unwanted breakdowns that should be fixable. Many have pre-disability selves that are vividly remembered. That complicates the idea of disability being an integral part of themselves. Disabilities that come with age, or from disease or accident, sometimes don't feel like something you live with and embrace, at least not right away. And it should be noted that chronic pain and illness straddles the line between disability and sickness in ways that make these discussions of cure and improvement even more complicated.

Over time though, even people who on some level think about a cure tend gradually to adjust their self-image, so that while a cure may in some ways still feel desirable, the ramifications of it become harder to map out. That alone makes talk of cures, recovery, and even "overcoming" disability far more messy than it tends to be in popular rhetoric.

Finally, most of us have many more immediate things to think about, like whether a stranger will ask us a rude question in the line to get coffee, where and when we'll be able to go to the bathroom, or whether an extra hour of work or an extra $20 in earnings will causesus to lose hundreds of dollars in benefits, maybe our health insurance too.

So when the topic of a “someday” miracle cure comes up, or is shoved in our faces as the only sensible feeling to have about disability, we tend to say something along the lines of: “I don’t want to be cured!”

When you think about it, it’s really not that weird.

Bad Ideas About Disability

Photo of a yellow diamond road sign reading BAD IDEA

I spent some time this morning in an exasperating Twitter discussion about disability terminology. A man started off angrily objecting to the #CripTheVote hashtag for being offensive, and quickly moved on to rejecting almost every common disability term ... including simply “disability” ... as out of date, offensive, negative, etc. The only thing remotely like a workable terminology he would accept was “special needs,” which made some sense since he said he was an educator. I should also point out that the man said he is hearing impaired, which gives his opinion on the subject some authentic credence.

Soon the conversation between him and about 5 other disabled folks boiled down to an absolutely ironclad, and in his view moral belief that “disability” itself doesn’t exist, since everyone has unique abilities and disabilities. I think I am paraphrasing him more or less accurately.

Both views ... about disability terms and about disability itself ... are familiar to me. Both are generally well-intentioned ideas put forward by people who sincerely believe they have a progressive understanding of disability. However, both are also, in fundamental ways, regarded as bad ideas by significant portions of the disability community.

This particular man happened to be extremely obnoxious and condescending, but in a way that is beside the point. He was being obnoxious about ideas that at least some polite and fair-minded people also sometimes advocate. The discussion has prompted me to start working on a new series of blog posts on the most prominent and influential bad ideas about disability.

I don’t mean bad behavior, intentionally offensive language, or simple ignorance. I won’t be citing “ableism” as one of those bad ideas, because it’s much too broad. I won’t include random theories tossed off by someone in the course of a freewheeling conversation. I’m talking about relatively specific, well-intentioned, carefully thought out, and widely circulated ideas about disability that are, unfortunately, bad.

And what do I mean by bad? Since I want to steer clear of categorical judgements like right or wrong, accurate or inaccurate, I’ll count a disability idea as “bad” if it meets one or more of the following criteria:

  • It makes a sizable percentage of actual disabled people angry or uncomfortable.
  • It fails to accomplish its intended purpose.
  • It tends to lead people ... intentionally or unintentionally ... towards behavior that is harmful to disabled people.

I’m not quite ready to dive in full force on this series. I plan to take my time with it. So over the next few months, my tentative plan is to explore these three bad ideas about disability:

1. Using euphemisms for disability ... (e.g., differently-abled or special needs)

2. Espousing the idea that disability doesn’t really exist.

3. Asserting that there is a limit to the amount of support and accommodation disabled people should expect from society.

If you want to nominate another bad idea about disability, along these lines, feel free to leave a note in the comments.

YouTube Vlog Idea

"Vlog" logo on a mixed dark and light blue background

Back in April, I wrote that I would be working on something new for Disability Thinking, possibly a vlog … a series of video pieces on YouTube. I’m still working on the format, but I think I have an idea to give the thing structure.

The tentative plan is to make short 15-20 minute videos that discuss one or two terms related to disability and disability culture, starting with words that start with an “A” and going through the whole alphabet all the way to “Z”. I would plan to share my own thoughts on each term, and probably invite viewers to send in comments ahead of time that can be shared. I did some brainstorming on terms, and here is what I have so far:

A    Ableism, Accessibility, Advocacy
B    _________________________
C    Crip, Chronic Pain, Chronic Illness
D    Disabled, Differently-Abled, Discrimination
E    Erasure, Eugenics
F    Functioning Labels
G    Guide Dog
H    Handicapped
I     Inspiration Porn, Independent Living, Intersectional
J    _________________________
K    _________________________
L    Long Term Care
M    Medical Model, Marginalized
N    Neurodiversity
O    Oppression, Opioids
P    Prejudice
Q    Quad Rugby
R    Representation
S    Self Advocate, Social Model, Special Needs
T    _________________________
U    Undue Burden, Universal Design
V    Vocational Rehabilitation
W    Wheelchairs, Willowbrook, White Cane
X    _________________________
Y    _________________________
Z    _________________________

I’d welcome any suggestions to fill in the alphabet. If it’s any good at all … meaning if anyone watches and listens … I would also consider some special programs for Patreon subscribers … such as Q&As and guest interviews.

Obviously I’m still working on this, but I hope to post something on actual introductory video on YouTube sometime before the end of this Summer.

Analogy

Disability Thought of the Week on a yellow lined notepad background

*Sigh* This started out as a nice, brief analogy. Then it grew to take into account more and more aspects of the disability community and it’s relation to the rest of society. Anyway, here it is. What do you think?

=====

This is the disability community ...

100 people are packed into a leaking rowboat, with the water half an inch away from spilling over into the boat.

1/4 of them are trying to transfer to a couple of newer, safer-looking boats visible nearby.

Another 1/4 are trying to get ashore, which is further away, but it’s where all their friends and family are.

Another 1/4 are trying to get everyone else in the boat to sit still, out of fear the boat will capsize and drown everyone immediately.

The last 1/4 insist there’s nothing wrong with the boat at all that can’t be overcome with hard work and a positive mental attitude.

Ten of the people in the boat keep wondering aloud why another ten are even there, since they clearly don't really belong on the boat.

About 1/3 of everyone in the boat is wearing life vests, so their chosen responses to the situation are sincere, but mainly philosophical and less personally urgent. About half of the life vests actually have holes in them, but the wearers don’t realize it.

All around on the shore are spectators who are either encouraging the people in the boat ... offering sometimes helpful, sometimes contradictory, sometimes obvious advice ... or discussing among themselves which of the people in the boat are inspirational, and which are negative and counterproductive.

A few people are swimming out from the shore to help. Although they all mean well, about half of them will probably drown themselves, taking a boat passenger or two with them.

Disability Thought Of The Week: Toughness & Vulnerability

Icon of a white silhouette head with a word cloud inside containing words associated with disability thinking, against a light blue background

When I was younger and just becoming familiar with disability activism and culture, one of the main ideas we were supposed to convey was that disabled people were tough. We were resilient, adaptive, persistent, low-maintenance, and easy to get along with. This message was deliberate. Disabled people are constantly underestimated and assumed to be weak, fragile, and just plain weird to be around, so it makes some sort of sense to emphasize the opposite qualities.

Now, roughly 30 years later, it feels like we are coming to grips again with vulnerability, not just as a community, but individually. Part of our message now is that we are not superhuman. We are not endlessly adaptable. Our resilience is not bottomless. Our patience and good cheer have limits. We get tired, anxious, depressed, and angry, and sick ... and not "just like" everyone else does, but in ways that are specific to our disabilities.

I appreciate this more balanced view of disability. It certainly fits my own disability experience, which is a combination of real capabilities and real weaknesses. But sometimes I sort of miss the tough, resilient, easygoing image. Because part of our reality is that we are tough, we are resilient, and given the crap we have to deal with every day, we are incredibly patient and damned delightful. Maybe we can be both. Maybe toughness and vulnerability are the true hallmarks of being a disabled person.

"My Scoliosis Story"

X-ray showing a spine curved by Scoliosis, (not mine).

X-ray showing a spine curved by Scoliosis, (not mine).

In January 1977, I had spinal fusion surgery to arrest and correct worsening Scoliosis. I was 10 years old. It was done at the Montreal Children’s Hospital, in Montreal, Quebec, Canada. It was the most serious and complex of the many surgeries I have had in my life to address various aspects of my underlying condition, which is Arthrogryposis. A little over five years ago, I blogged about what I remember from that experience:

Hospital Memories
Disability Thinking - November 7, 2013

I’m thinking about all of this again now because I recently discovered, quite by accident, several YouTube videos documenting Scoliosis surgeries and recoveries. For a few days I was sort of obsessed with them. So far, I’ve watched 8-10 series of videos. These are my two favorites

Julia Carlile // merseygirls

This is the first series I stumbled upon. It turns out Julia is semi-famous in the UK, as a member of “Britain’s Got Talent” competitors “Mersey Girls,” a dance troupe. But I didn’t figure that out until well into her series of videos documenting her scoliosis surgery.

TheScoliosisDiaries

This young woman and her mother are hilarious together, and in the best way. They really don’t seem to be putting on a show, and their attitude seems genuine, with only a very small dose of hipster irony.

The first thing I noticed about these, and the six or so other video series I watched, was that their surgeries and recoveries were much more effective and less arduous than mine were 41 years ago. They were sitting up less than 24 hours after surgery, and walking the next day. None of them were in casts or back braces afterwards. They all got dramatic curvature correction. Julia’s operation even left her spine flexible, so she can continue dancing. It’s just really impressive.

My biggest surprise is that I’m not a bit envious or resentful that their experiences and outcomes seem so much better than mine. Honestly, I’m not. I’ve asked myself several times … “Doesn’t this make you angry?” No. It doesn’t. It’s super interesting to me, but that’s all. I guess that’s good, but it’s also a little weird.

My other takeaway is that I’m reconsidering my feelings about “inspiration porn” and the usefulness of the Medical Model as ways for some disabled people to process their own disabilities.

Some of the “Scoliosis Journey “videos I’ve watched are heavy on inspiration … all about “fighting” Scoliosis, with soundtracks of self-esteem-themed pop songs, and bland platitudes about overcoming and perseverance. But just as many of the videos are more subtle, straightforward, and unsentimental, like the videos embedded above. The people in them talk about their feelings and thoughts in specifics. They present as unique personalities, with distinct points of view, experiencing real things, not players in an overworked narrative. They are also funny, and I find that makes a huge difference.

Granted, there is probably a lot missing from these videos. For instance:

- We see some fear and anxiety, but little hint of real confusion, or any sense of feeling trapped and forced into the procedure. Maybe that’s because they all are really okay with what’s happening, but it’s got to be a pretty common feeling among children and adolescents undergoing this procedure.

- There’s little to no evidence of real conflict or even minor friction with the hospital staff. Again, maybe that’s because everything went swimmingly. But on average, I would say it’s more common for there to be at least some disagreement or personality clashes during a hospital stay, even if it’s just irritation that never becomes serious. I wonder if it would even be possible to continue with this kind of documentation if some kind of dispute emerged. Would the hospital try to shut down filming that looks like it’s going to make them look bad, instead of cheerfully participating as they seem to do in these videos?

- Only one or two of the videos I watched included any hint of viewing Scoliosis as a disability, in the broader, social identity sense. For most of these people, it’s just a medical condition to be taken care of. A few seem to view their documentation as a kind of peer mentoring for other people with Scoliosis, which can be the start of a broader disability consciousness. But for the most part, the people in these videos don’t yet seem to have much of a sense disability identity, good or bad.

And you know what? They seem to be fine anyway. Maybe its a good reminder that while the Social Model and disability identity contribute to a full understanding of disability and addressing correctable injustices in society, they aren’t always necessary for individual disabled people to live a happy life.

As for “inspiration porn,” the key to me is that these really are the patient’s own stories, told from their point of view, even though it’s almost always parents behind the cameras. Even when family and friends appear on camera, they don’t try to make the story all about them. I am also struck by the fact that although these people are clearly approaching Scoliosis from a Medical Model point of view, none of them seem to view themselves as “fighting” Scoliosis, and the sure don’t seem to hate the way they are or feel flawed or ostracized. They’re hopeful of improvement, but not particularly desperate.

The only thing i would like to say to these young people about their experience is that I hope they never feel they have to be cheerful and positive all the time. I’m sure they aren’t always upbeat anyway, but I hope they don’t beat themselves up about it when the pain in their backs, or maybe the funny way people may still look at them, gets them down. Like I said, they seem to be doing just fine without a deep relationship with disability culture or an understanding of the nature of ableism. But it’s one thing to be a positive person. It’s another to think it’s your responsibility to be that way.

These stories are obviously not fully representative of Scoliosis, and certainly not of disability in general. But I think they might be useful examples of how to maintain a healthy mix of the Medical and Social models, and a healthy balance between sentimentality and practicality when telling your disability story … to others and even to yourself.

Modest Goals

Picture of an ice hockey goal net

“Disability Awareness.” For some it’s a blanket term covering all the aspirations disabled people have for social acceptance and having our needs accommodated. For others, it’s hopelessly vague, and in practice, meaningless. For a long time, I haven’t had much use for disability “awareness” myself, until just recently.

As disability activists have struggled to pass key legislation and defend the imperfect supports disabled people already have. Disability culture strives for full representation and a wholesale redefinition of disability. Meanwhile, I have started to feel like it might be useful to rethink the basics. We have pretty good ideas of where we want laws and institutions to be regarding disability in society, but achieving those goals seems like a tall order. Is there a more basic set of goals we can achieve on a person-to-person level? Should we aim a bit lower in the short term, and adjust our expectations with people … non-disabled and some disabled people too … who aren’t quite equipped yet to deal with the ambitiously ideal world we are working towards? If expecting people to get it all perfectly right with us is correct but unrealistic right now, what can we reasonably expect?

The more I think about it, the more convinced I am that any actual goals we have for “disability awareness” need to be modest, at least for the foreseeable future. That seems logical, if a little bit uninspired.

So what, exactly, are some modest, realistic goals? What can and should we hold people to, (even perfect strangers and disability newbies), with confidence and assertiveness, and without having to put them through a ten-part disability seminar?

1. Understand and accept that some forms of praise and sentimentality make us uncomfortable. Of course you mean it in the kindest, most positive way. Most of us like specific praise for the work we have done, or our objective accomplishments and efforts. But random praise from strangers and casual acquaintances, simply for living and functioning, usually make us feel awkward. It's a little like being gushed over by the teacher in front of the whole class. And almost none of us likes it when people talk to us with that sweet, saccharine voice normally reserved for infants and adorable pets.

2. Know that disabled people, to varying degrees, have to deal with discrimination that can be personally annoying, but also sometimes life-altering and life-threatening. We call it “ableism,” and though the word may be new to you … and maybe sounds a little contrived … it describes a real thing with real-life consequences. We don’t all experience it in the same way, or to the same degree, but all of us do experience it.

3. Recognize that disabled people are under a lot of social pressure to be cheerful and uncomplaining ... brave soldiers and inspirational examples to others. That means that reacting to disabled person’s personality and tone is more complicated than simply liking and praising disabled people who are sweet, and disliking or disapproving of disabled people who seem grouchy and dissatisfied. If we are hard to live with sometimes, we often have reason to be. And when we are unending rays of sunshine, that can sometimes hide how things really are for us.

4. Unless you are in a specific official position that explicitly requires you to determine somebody’s disability, you should just believe what people say about their disabilities. Anyone can be a liar or self-deluded, but it's particularly obnoxious for disabled people to be constantly doubted and questioned by random people for no good reason.

5. No, we haven’t fully decided what to call ourselves. At the moment, there seems to be a tie between “person with a disability,” and “disabled person.” The best thing for non-disabled people to do in most situations is accept what each of us chooses for our preferred terminology, and leave it at that.

6. If you’re non-disabled, don’t try to “educate” a disabled person about disability. It may be well-meaning, and you my well be right, but it’s presumptuous in a very personal and fundamental way to try to explain our disabilities to us. In fact, even if you are disabled yourself, be very careful and humble about “correcting” another disabled person's views about disability.

None of this is beyond an ordinary person’s ability to understand, or at least practice in everyday interactions. It doesn’t require a background in sociology. You don’t have to be politically progressive. And you don’t have to have a disability, or have a disabled person in your family. At the bottom of each of these goals is a simple thing that may require some effort and the occasional reminder, but needs little in the way of knowledge or education: Treat disabled people as people with agency, unique stories, and human perspectives of their own. And then act accordingly.

It's not too much to ask.