Month: January 2016

Access straw men

Real Social Skills

A lot of people are reluctant to change anything for the sake of accessibility, even if the change would be inexpensive and easy. Often, they resist even considering the possibility that there are changes they could make that would enable a broader range of people to participate.

Often, they set up access strawmen as a way to avoid negotiating access. 

Those conversations go like this:

  • The disabled person asks for a modification of some sort.
  • The resistant person ignores the actual request.
  • They instead describe something vaguely related that’s obviously unreasonable.
  • Then they insinuate that the disabled person asked them for the obviously unreasonable thing
  • They implore the disabled person to be more flexible and reasonable
  • The disabled person generally doesn’t get their needs met, and often ends up disoriented and feeling a lot of shame

An example:

  • Douglas: I can’t climb stairs. I need class to be held in a room on the first floor.
  • Roger: It sounds like what you really need is for all the buildings to be rebuilt for you. I can’t rebuild all the buildings; I have to focus on teaching.

Or sometimes:

  • Dawn: I can only read lips if people are looking at me. Can we talk about how to make class discussions work?
  • Robin: I can’t stop other students from talking to each other. Why don’t you take this opportunity to work on your listening skills?

When a person with a disability asks for an accommodation in school, work, a conference, or wherever, don’t set up a straw man to reject. Respond to the actual problem, and try to find a solution. Is there  a way to do the thing they’re asking for? If not, why not? Is there something else you *could* do that would work? Occasionally there is no good solution; more often, there is a way to make things work. When people in positions of responsibility are willing to look for access solutions and put effort into implementing them, a lot of things become possible.

“I don’t want him to feel different”

Real Social Skills

I’ve encountered a lot of parents and professionals who are reluctant to talk to disabled children about their disabilities.

People often believe that children with disabilities are innocent, and that they can protect their innocence with silence. They express concerns along the lines of “I don’t want him to think something is wrong with him,” or “I don’t want her to feel different,” or “I don’t want them to feel bad about themself.”

You can’t protect disabled kids this way. They know that they are different, and they know that this difference is perceived negatively.

Some examples of how kids figure out that they are different:

  • Kids watch what other kids do.
  • Typically developing younger siblings develop skills that they still haven’t mastered and may never master. They notice. They also notice how their parents react to this.
  • Kids with disabilities often see other kids their age doing something that looks fun, try to join in, and find that they can’t keep up. They notice, and they have feelings about this.
  • They also notice when other kids think they’re weird or boring and avoid them.
  • If they go to a special education program, they notice that other kids don’t take the short bus to school (and they hear what other kids say about the short bus, or they see it in their body language.)
  • They also notice that their school is really different from schools on TV and in stories.
  • All the kids their age on TV and in stories can do things that they can’t do. They notice.
  • Disabled kids often struggle to understand something that’s clear to everyone else in the room. They notice that this happens a lot.
  • Kids with disabilities get called the r-word, or the moral equivalent. 
  • Adults expect them to do things that they can’t on a regular basis. Other kids their age can. Adults are disappointed or angry. They notice.
  • Kids notice when they have to go to therapy and other kids don’t.
  • Kids notice when doctors hold them down for painful procedures while they struggle and cry. They notice that this doesn’t happen to kids in stories and that it’s not in any of the books about being a kid.
  • They notice that they have a lot of tests and that they’re talked to in ways that other kids aren’t.
  • They are often required to follow rules that other kids don’t have to follow. They notice that, too.
  • Parents talk about how tired, scared, and overwhelmed they are by their child’s needs or navigating the systems. Kids overhear. 
  • Many kids also eventually overhear the name of their condition and google it. 
  • And any number of other things.

Your silence doesn’t protect them from any of these experiences; it just isolates them. Kids are already bearing the pain of disability and of other people’s reactions to their disability. If no one will talk to them about it, they are also very, very alone. You can’t protect their innocence; you can break the silence that isolates them.

Uncertain abilities and the right to fail

Real Social Skills

Being disabled often means being unable to reliably predict what you will and won’t be able to do. Or whether something will be hard or easy. Sometimes this is for physical reasons; sometimes it’s because of how people treat us; often it’s both.

For instance, taking a class might involve uncertainty about any or all of these things (and lots of other things that I didn’t think of):

  • Am I cognitively capable of learning the material?
  • Am I physically capable of doing everything the class requires?
  • Will anyone be willing to do the group work with me in a way that makes it possible?
  • Will I be well enough to come to class regularly?
  • Will I live long enough to get the chance to apply what I learn in the class to my work?
  • Do I have the executive functioning to do this when I’m also doing other things?
  • Will the class material be so triggering that I dissociate frequently and miss a lot of what’s going on?
  • If I miss material for disability-related reasons, will there be a way to make it up?
  • Will I be able to get into the classroom?
  • Will I be able to stay in the classroom safely?
  • Will the teacher want me there?
  • Will they get me accessible materials in a timely manner?
  • Will they teacher have the skills to figure out how to teach me?
  • Will they allowed to be flexible in the ways I need them to be?
  • Will I have to fight for what I need? Will the fight be successful?

Disability typically involves a lot of uncertainty. It means that it’s often completely unknowable whether or not you will be able to do something. This means that the risk of failure is often much higher than it is for people without disabilities. If we try new things, we’ll usually fail at more of them than people without disabilities.

Sometimes people take that to mean that we should only be allowed to do things that are definitely within our abilities, to spare us the pain of failure. Or, to spare them and us the pain of having to notice that we’re disabled and that there are things we can’t do, no matter how hard we try.

This has disastrous consequences for children in special education and adults who live in the system, who may never be allowed to attempt anything harder than preschool curriculum. And, when we’re allowed in mainstream settings, we’re often terrified that failure may mean that we’ll be kicked out and sent to segregated settings.

When we’re not allowed to fail, we’re also not allowed to succeed. Because for all people, success rests on a lot of failed attempts. And because disability typically involves uncertain abilities, we usually need to make a lot more failed attempts than nondisabled people as we figure it out. Watching our peers succeed at things we fail at can be painful. So can trying really hard and finding that something we wanted to do is not possible for us. So can finding that something is dramatically more difficult for us than anyone else we know. That pain is real; it’s also bearable. We can fail and be ok. We can bump up against our limitations and be ok. We don’t need to live in cages full of easy tasks to avoid these things.

Short version: Being disabled means we often can’t reliably predict what we can and can’t do. (Or how hard something will be.) Finding the things we can do well often involves trying and failing at a lot of things.  The only way to find out is by trying things. Sometimes people try to prevent us from ever trying anything because they think that the pain of failure is unbearable. When we’re not allowed to fail, we’re not allowed to succeed either. We need space to fail without shame or punishment, so that we can find the things that we can do. It’s ok to be disabled. It’s ok to not know what you can do. It’s ok to try things that you might fail at. It’s ok to fail and keep trying, or to give up and try something else. It’s ok to decide that it’s not a good time to take those kinds of risks. We all learn to calibrate when to take these risks and when not to, and these are decisions that we need to be allowed to make.

People with disabilities are worthy of money and effort

Real Social Skills

In the part of special education community that promotes inclusive education, I often hear advocates say things like “inclusion doesn’t have to be hard,” “inclusion doesn’t have to be expensive,” and “inclusion doesn’t require special skills.”

This isn’t really true, unless we exclude a lot of people from “inclusion”. Some access needs are easy to meet; many are not. We can bring some people in without too much trouble. In order to commit to full inclusion, we’re going to have to be willing to spend money, acquire expertise, do hard things, and make changes.

For instance, people who can’t rely on speech as their primary means of communication need support learning to communicate. This is inherently expensive:

  • They usually need expensive devices
  • (The cheapest good option is an iPad with a $200 app; some people need dedicated devices that cost upwards of $10,000.)
  • They also usually need therapy
  • Having a communication device doesn’t solve all of someone’s problems; they also have to learn how to use it
  • (And they usually need help learning how)
  • Or they need something like RPM, which is low-tech but requires twice-daily 1:1 lessons which use scripts that generally have to be prepared in advance specifically for that student.
  • If they are in school, they need teachers who know how to teach them (which generally means that experts have to teach their teachers how.)
  • AAC communication is slower, and can be hard to interpret
  • Inclusion doesn’t happen automatically; teachers have to learn how to make sure AAC users are able to participate and be heard in class
  • (Eg: If someone isn’t using complete sentences yet, it can be hard to know what they mean. You have to be willing and able to do the work of helping them to clarify).
  • (And: if someone responds slowly, you have to proactively make sure they get a chance to express their thoughts in class discussions)
  • All of this requires money, expertise, effort, and willingness to change
  • If we’re only willing to consider cheap options, people who need communication support are left behind

Another example: People need to be able to get into the building

  • Many buildings were built incorrectly
  • They may have large flights of stairs at all entrances
  • They may have many floors that can only be reached by stairs
  • They may not have any accessible bathrooms
  • The bathrooms may all be too small to enter in a wheelchair (which means there’s no way to fix them without moving walls)
  • All of the doors may be big and heavy
  • Often, there’s no cheap way to fix this
  • There may be inexpensive starting places; we can’t stop there
  • If we care about including people with mobility disabilities, we have to be willing to spend money to fix buildings
  • We have to hire architects who have expertise in accessibility
  • We have to make sure that people with mobility disabilities are part of the conversation, even if no one with a mobility disability has expressed interest in accessing the building recently
  • We have to be willing to make changes that make the building look different, in ways that may mean changing or destroying things that longtime users of the building are emotionally attached to.

We can start with the low hanging fruit; we should not pretend that all fruit is low-hanging. A lot of access needs are inherently expensive. There are a lot of needs that no one even knows how to meet yet; the expertise we need does not yet exist. If we want to commit to full inclusion of children with disabilities in schools; if we want to fully include adults in all aspects of society, we need to be in it for the long haul.

Short version: In order to stop excluding people with disabilities, we’re going to have to spend money. We’re going to have to bring in expertise and develop expertise. We’re going to have to do difficult things. We’re going to have to make changes. We’re going to have to start seeing this as normal. People with disabilities are worthy of money and effort.

Ableist hostility disguised as friendliness

Real Social Skills

Some people relate to people with disabilities in a dangerous and confusing way. They see themselves as helpers, and at first they seem to really like the person. Then the helper suddenly become aggressively hostile, and angry about the disabled person’s limitations or personality (even though they have not changed in any significant way since they started spending time together). Often, this is because the helper expected their wonderful attention to erase all of the person’s limitations, and they get angry when it doesn’t.

The logic works something like this:

  • The helper thinks that they’re looking past the disability and seeing the “real person” underneath.
  • They expect that their kindness  will allow the “real person” to emerge from the shell of disability.
  • They really like “real person” they think they are seeing, and they’re excited about their future plans for when that person emerges.
  • But the “real person” is actually figment of their imagination.

The disabled person is already real:

  • The helper doesn’t like this already-real disabled person very much
  • The helper ignores most of what the already-real person actually says, does, thinks, and feels.
  • They’re looking past the already-real person, and seeing the ghost of someone they’d like better.

This ends poorly:

  • The already-real person never turns into the ghost the helper is imagining
  • Disability stays important; it doesn’t go away when a helper tries to imagine it out of existence
  • Neither do all of the things the already-real disabled person thinks, feels, believes, and decides
  • They are who they are; the helper’s wishful thinking doesn’t turn them into someone else
  • The helper eventually notices that the already-real person isn’t becoming the ghost that they’ve been imagining
  • When the helper stop imagining the ghost, they notice that the already-real person is constantly doing, saying, feeling, believing, and deciding things that the helper hates
  • Then the helper gets furious and becomes openly hostile

The helper has actually been hostile to the disabled person the whole time

  • They never wanted to spend time around the already-real disabled person; they wanted someone else
  • (They probably didn’t realize this)
  • At first, they tried to make the already-real disabled person go away by imagining that they were someone else
  • (And by being kind to that imaginary person)
  • When they stop believing in the imaginary person, they become openly hostile to the real person

Short version: Sometimes ableist hostility doesn’t look like hostility at first. Sometimes people who are unable or unwilling to respect disabled people seem friendly at first. They try to look past disability, and they interact with an imaginary nondisabled person instead of the real disabled person. They’re kind to the person they’re imagining, even though they find the real person completely unacceptable. Eventually they notice the real person and become openly hostile. The disabled person’s behavior has not changed; the ableist’s perception of it has. When someone does this to you, it can be very confusing — you were open about your disability from the beginning, and it seemed like they were ok with that, until they suddenly weren’t. If this has happened to you, you are not alone.

Diagnosis only goes so far

Real Social Skills

The way medical diagnosis works can often make disabled people feel fake. (Any kind of disabled people, including people with mental illness or chronic illness). There’s a widespread culture misperception that real disabled people have a clear professional diagnosis, and that everyone else is just faking it for attention or something. It doesn’t actually work that way. Diagnosis is more complicated than that.

People with disabilities are disabled whether or not anyone has diagnosed their disability. Diagnosis is an attempt to recognize the underlying reality (and often an attempt to get someone access to medical treatment or services.) But it doesn’t change the reality. Someone diagnosed today was already disabled yesterday. Many people are disabled for years or decades before they get access to accurate diagnosis. Being undiagnosed doesn’t necessarily mean you’re not disabled. It just means you haven’t been diagnosed with anything.

In addition, some conditions aren’t currently diagnosable, because they have not yet been identified and named by doctors. If a condition was discovered for the first time today, someone had probably already had it yesterday. And last year. And back and back and back. Being undiagnosed and currently-undiagnosable doesn’t mean that you’re fake. It just means that you don’t have an answer.

Even when there is a diagnosis, there is not always an explanation. Some diagnostic categories are vague and unsatisfying. Some diagnoses amount to a list of symptoms you already knew you had. These kinds of diagnoses allow your doctor to bill your insurance and may get you access to treatment, but they don’t always give you answers. Being diagnosed with something vague doesn’t mean you’re fake either. It just means that you don’t have an answer.
In addition, diagnostic categories are often approximations that don’t quite describe reality for everyone. It’s fairly common to meet diagnostic criteria imperfectly. Or to have an atypical form of a condition. This doesn’t mean you’re fake either. It just means that reality is more complicated than textbooks. (Being similar to the textbook also doesn’t mean that you are fake; it just means that sometimes the textbooks are right about some people.)

Even when diagnosis gives you a lot of answers, it often won’t give you all the answers you would like to have. Mostly disabilities are fairly poorly understood. For most people, disability involves significant amounts of uncertainty, and many unanswered questions.

I don’t want to overstate this. Sometimes diagnosis does get you real answers. Even when it doesn’t, it can be very important. Often, even without answers, diagnosis can make your life a lot better by getting you access to treatment, support, or accommodations. Diagnosis can also mean that someone gets treatment or support that keeps them alive. Diagnosis is often very important for any number of reasons. It’s just not the ultimate decider of who is and isn’t really disabled. Disabled people who aren’t diagnosed with something that fully explains their symptoms are real disabled people, and their needs matter just as much as anyone else’s do.

Short version: Disabled people are disabled whether or not they are diagnosed. Diagnosis recognizes reality; it doesn’t create it. There are a lot of reasons why some disabled people aren’t diagnosed, or aren’t fully diagnosed. Scroll up for more explanation of why that is.

“Choosing to be disabled”

Real Social Skills

Ableists often believe that “choosing to be disabled” is a major social problem. They aggressively believe that most disabilities aren’t real, and that people could stop being disabled if they’d just make better choices. They think most disabled people are fakers who just stay disabled out of laziness.

They may see accessibility and accommodations as “enabling”, and try to get them taken away. Or, they may try to force people into treatment (whether or not safe and effective treatment actually exists.) Or they may just be mean and hostile towards disabled people they encounter. Or any number of other things. This hurts all disabled people badly.

People with disabilities often feel like they have to prove that they are not faking, and that their disability isn’t a choice. This can lead us to worry a lot about whether we’re somehow doing this on purpose. In this state of mind, it’s really easy to find things that feel like evidence that we’re fake.

Disability usually involves tradeoffs. We can’t choose to have all of the same abilities as nondisabled people, but we often can make some choices about which abilities to prioritize. This can superficially look like “choosing to be disabled” if you don’t understand how disability works.
For instance:

Medications:

  • All medications have side effects
  • Managing the condition and the side effects can involve complicated tradeoffs
  • There is usually more than one option
  • It can often be a choice of what abilities you prioritize most, and which impairments are most tolerable
  • You may be able to choose to make any particular impairment go away
  • That doesn’t mean you could choose to be unimpaired
  • Ableists will think you are faking no matter which choices you make. They are wrong.

Mobility equipment:

  • People with mobility impairments often have more than one option, and there can be complex tradeoffs.
  • Eg, which is more important to someone?
  • Being able to go further without fatigue (in a power chair) or being able to ride in a regular car (with a collapsable wheelchair)?
  • Being able to travel a mile on the sidewalk (in a wheelchair), or being able to use all of the subway stops (by walking)?
  • Being able to get into inaccessible buildings (by walking), or being able to go out without being in pain (in a wheelchair)?
  • Retaining the ability to walk (by spending a lot of time doing physical therapy) or being able to take a full course load in college (by spending that time on studying and losing the ability to walk)?
  • No matter which choice you make, ableists who don’t understand disability will see it as “choosing to be disabled”. They are wrong.

There are any number of other examples, for every type of disability. This affects every kind of disability, including physical, sensory, cognitive, psychiatric, chronic illness, and the categories I forgot to mention.

Short version: We all have to make choices about how to manage our disabilities, and there are often complicated tradeoffs. No matter which choices we make, ableists will think we’re making the wrong ones. No matter which choices we make, ableists will think that we are faking.

In the face of this kind of hostility, it is easy to start doubting ourselves and believing that we’re fake and terrible. It helps to remember that the ableists don’t know what they are talking about (even if they are disabled themselves). Making choices about how to manage disability is just part of life. The ableists are not experts in how you should be living you life; they are wrong and they are mean.