Tag: social skills

When professionals assume that parents of disabled kids see ghosts

Real Social Skills

In the special needs service provision community, there is a strongly held narrative about what happens when a kid turns out to be disabled. This narrative causes a lot of problems.

According to this narrative:

  • Professionals believe that parents have a strong emotional attachment to the typically developing kid they were expecting.
  • They are usually in denial even about obvious signs of disability, and will hold on to their fantasy for as long as possible.
  • At some point, the parents are forced to confront their child’s disability.
  • They lose their fantasy of the child they expected, and this is emotionally devastating.
  • In order to move on, they have to mourn the loss of the child they expected and the life they expected.
  • Parents need emotional validation and help working through that.
  • All of this is very widely believed, and I think this model causes a lot of problems.

I think the grief model is a problem on several levels:

When parents are grieving for the child they expected, it’s really hard on the child they already have:

  • Children want adults in their lives to see them, approve of them, and love them.
  • When parents are seeing ghosts, they’re not seeing their real child.
  • Children can tell when adults in their lives are looking past them. It hurts.
  • When parents are mourning for the child they expected, they are disappointed by the child they actually have.
  • Children can tell when adults in their lives are profoundly disappointed in them. It hurts.
  • And it especially hurts when the child has no control over the things that are disappointing their parents.
  • While parents struggle to accept their children as they are, their children struggle to cope with being parented by people who do not yet find them acceptable.
  • That hurts. And it leaves scars.

Kids need support in navigating this, and they don’t often get it:

  • There is often a tendency to pretend that kids don’t know.
  • But disabled kids aren’t a separate species. They’re kids, and kids are almost always very sensitive to how adults in their lives feel about them.
  • Kids need people in their lives who see them, and not ghosts.
  • Kids need people in their lives who can accept and value them as they are.
  • Sometimes that can’t be their parents. Or can’t (yet) be their parents.
  • But it needs to be someone. (And their parents need to understand that their attitude towards their child affects their child)
  • If you work with kids in any capacity, it is likely that this person needs to be you sometimes.
  • Looking at the real child and seeing a person matters. Seeing them and not a ghost of someone you expected matters. Making it clear that you’re not disappointed in them matters.
  • If you can do that for kids you work with, it can prevent a lot of pain. (And can likely help their parents to come to a point of acceptance sooner.)

Further, not all parents actually feel this way:

  • The professional narrative about grief and mourning does not accurately describe all parents.
  • Parents of disabled kids have all kinds of feelings about their kids for all kinds of reasons.
  • Not all of these feelings are negative.
  • Even when parents have negative feelings, they’re not always grief.
  • Sometimes parents feel overwhelmed and confused about how to support their child.
  • (Or worried about how to afford the things their child needs).
  • (Or repulsed by things professionals are telling them to do to their children as therapy.)
  • Sometimes parents feel ashamed about not having noticed sooner.
  • Sometimes parents feel concerned that they may have caused their child’s disability.
  • Or any number of things.
  • Not all parent feelings are grief, and the full reality needs to be acknowledged

Parents are sometimes pressured into mourning when they weren’t already grieving:

  • The grief and mourning narrative is strong and pervasive.
  • Parents are often expected to describe everything they’re feeling as grief.
  • Parents are often not given any support in working through the other feelings and doubts they are having.
  • This can result in parents being pushed into a mourning process that wasn’t actually necessary for them.
  • It is very damaging to both parents and children when this happens.
  • It is not good to grieve for the living. When it’s avoidable, it should be avoided.
  • It’s important to be careful to avoid pushing parents into adopting a grief narrative unnecessarily.
  • (Sometimes it’s not avoidable, for reasons that aren’t anyone’s fault. But it’s often more avoidable than people realize.)

Short version: There is a pervasive professional narrative that says parents of disabled kids need to mourn for the child they were expecting before they can accept their real child. This isn’t always true, and parents are sometimes pressured into feeling and mourning through grief that they otherwise would not have experienced. When parents *do* mourn for their living children, that is emotionally devastating for the kids. Parents and kids both need much better support in navigating the disability acceptance process.

For another perspective on this, see Jim Sinclair’s classic article “Don’t Mourn For Us” (written about autism specifically.

You don’t have to be better than you are to make things

Real Social Skills

You don’t have to be better than you are to make things.

The things you make do not have to be perfect, and neither do you.

It’s ok to make flawed things. It’s ok to make mistakes.

Everything you make will be flawed. Everything everyone makes is flawed.

No matter how good someone is, what they create will be imperfect. If you wait until you’re capable of making a perfect thing, you’ll never make anything.

You do not need to be the best in order for it to be ok to make things. You don’t even have to be impressive.

It’s ok to make things even though other people make better things.  It’s ok to make things, even if other people know more than you do.

It’s also ok to make things even if you’re not sure the things you’re making are any good at all.

It’s ok not to know everything. It’s ok to make mistakes. It’s ok to make things that aren’t good enough.

Everyone who makes things, has made things that weren’t good enough, and will continue to do so. Everyone who is skilled started out unskilled. Nobody starts out as the best.

It’s ok to make things, even if you are the worst, even if you are the least skilled, and even if you make a lot of mistakes that others wouldn’t.

You don’t have to be the best in order to make things. You just have to make things.

You don’t have to be perfect. You don’t have to be better than you are. You can make things as you are, with the skills and knowledge you already have.

You don’t have to be a professional or an expert in order to make things. You don’t have to have years of experience making things in order to make things.

You don’t have to wait to be better, or to know more, or to hold off on making things until you’re capable of making better things. You can make the things you’re already capable of making.

No matter who you are or what your skill level is, you’re good enough to make things.

You can make the things you’re already capable of making, and you can keep learning.

Electronic books can make reading possible for people with executive dysfunction

Real Social Skills

Electronic books can be an important disability accommodation for a lot of people, including some people with normal vision. If you’re having a lot of trouble reading, or not reading as much as you’d like to, it might help to use electronic books.

There are a lot of steps involved in reading a print book. Some of these steps can be difficult or impossible for people with impaired executive function, autistic inertia, fatigue, chronic pain, or other conditions. Some difficult steps can be eliminated with electronic books.

In order to start reading a print book, you have to be able to do all of these things:

  • Have the book in a place where it’s available to you when you have time to read.
  • (Which can involve remembering to bring with you somewhere.)
  • (And keeping track of the book and not losing it.)
  • Decide to stop what you’re doing and do a different kind of task.
  • Figure out where the book is.
  • Go get the book.
  • Avoid getting distracted by other things as you find the book or get the book.
  • Figure out where you are in the book.
  • (Which can involve things like remembering the place.)
  • (Or using a bookmark, which comes with its own multi-step challenges like remembering that bookmarks exist and having one available.)
  • Open the book to the right page.
  • Avoid getting distracted by other parts of the book.
  • Get into a position in which you can read, which you can also sustain long enough to read for a significant among of time.
  • Actually start reading the book.
  • If you want to take notes or highlight, you also have to gather all your note-taking tools.
  • And not get distracted and forget what you’re doing.
  • And not forget where you put the book in the process.
  • That’s a lot of steps, any one of which can sometimes be difficult or impossible.
  • Using electronic copies can eliminate some of these steps, or make them easier.
  • This can be game-changing.

Some ways in which electronic copies can eliminate steps:

  • You can store your entire electronic library on one device (or synced to multiple devices).
  • If you know where your device is, then you know where all of your electronic books are.
  • This can mean you don’t have to physically search for anything.
  • (Electronically searching to remember where you put something can be much easier.)
  • You also don’t have to remember to bring a specific book. You just have to remember to bring one device.
  • (Which can be a device like your laptop, phone, or iPad which you’re in the habit of carrying with you anyway).
  • If you’re already using your computer, you don’t have to get up to go get your book.
  • You also don’t have to change positions.
  • Being able to stay in the same position and location can make it much easier to start reading.
  • It can also be easier to remember your place. A lot of software will leave the book open to the same place as when you were last reading it.
  • Searching can be easier, faster, and less distracting than flipping through a print book. (This isn’t true for everyone, but it’s true for some people).
  • Electronic bookmarks may also be easier to use than physical ones.
  • You don’t have to look for highlighters, pens, pencils or notebooks, all of that is right there in the book-reading software.
  • Eliminating these steps can make reading a lot easier.
  • Making it easier can make it possible.

This isn’t the right strategy for everyone; computers, phones and other devices have their own executive dysfunction pitfalls. But for some people, it makes reading much more possible.

Short version: Some people have trouble reading print books, even if they have normal vision. Sometimes the reason for this is that executive dysfunction (or another disability) makes some of the steps involved in starting to read a print book difficult or impossible. (Eg: people with ADHD might get distracted looking for the book.) For some people, using electronic books instead of print books can make reading much more possible. Scroll up for some specific reasons that electronic books can help.

Sometimes understanding comes with time

Real Social Skills

Sometimes when you don’t understand something, it’s because you’re not ready for it yet. This can be particularly true of fiction and other narrative, but it can be true of almost everything.

Sometimes there are specific identifiable things you have to learn first. Sometimes you can go back and learn those things, and then the confusing thing will start to make more sense.

Sometimes it’s not a specific thing you don’t know. Sometimes it’s mostly just not being ready yet. Sometimes it’s just a matter of giving yourself time and experiencing more of life first. Some things that are incomprehensible at one point in your life start making sense when you revisit them later.

It’s worth keeping this in mind. You don’t have to do or understand everything all at once. It’s ok to give yourself time. Eg: If a book you think it’s important to read doesn’t make sense to you, it may be worth putting it aside for a few years and trying again later. A skill that seems impossible to acquire may become possible later. Or any number of other things.

Not everything is like that. Time doesn’t make everything make sense and it doesn’t make everything possible. (And people who say “you’ll understand when you’re older!” are almost always being inappropriately dismissive.) But it is true of a lot of things for a lot of people, and it is probably an experience you will have at some point.

Short version: Sometimes things that seem incomprehensible start to make sense as you gain more lived experience. It’s important to keep in mind that you don’t have to do everything all at once, and you don’t have to understand everything all at once. Some things take time, and that’s ok.

When fear of wheelchairs is really fear of institutionalization

Real Social Skills

Journalists sometimes inappropriately describe wheelchair users as “wheelchair-bound”. This is offensive, because it’s misleadingly negative. Wheelchairs aren’t a restriction, they’re a liberation. They make it possible to go places and do things, and to move through the world without needing someone else’s permission. Wheelchairs are absolutely amazing and should be viewed as positive.

Except — in institutions, wheelchairs are routinely used as restraints. (And sometimes instruments of humiliation and torture). And I think that is probably a factor in why many people find wheelchairs frightening.

Walk through the hall of any nursing home, and you’ll see people parked in clunky manual wheelchairs that they aren’t able to self-propel. (And which don’t fit properly, don’t have good positioning support, and can be very painful to sit in for extended periods). Those people aren’t being liberated. Those people are very literally wheelchair bound. Often over their obvious protests.

People in institutions who try to get out of wheelchairs tend to be strapped in with seat belts they can’t undo. People who persist in resisting that tend to be medicated until they can’t. People who live in institutions also tend to have some times in their lives where things look pretty good, where it looks like they’re being well cared for and that they’re happy and enjoying themselves. Those good times aren’t representative of what it’s like to live in a institution. On some level, everyone knows this.

I think sometimes, when people are afraid of wheelchairs, what they’re really afraid of is institutions. They’re afraid that needing a wheelchair means that those kinds of things will happen to you. They see people in wheelchairs having a good time and out and about in apparent freedom, and they viscerally feel like it’s an illusion, like it’s no more representative of reality than the times you see institutionalized people having fun and looking free.

I think that in order to teach people that they’re wrong about wheelchairs, we have to teach them that they’re wrong about institutions. Losing mobility doesn’t have to mean living locked up in a nursing home. Neither does losing speech or words or cognitive functioning. People with severe physical and cognitive disabilities live in their homes in the community.

There is no disability that means someone needs to be institutionalized and treated the way people are treated in nursing homes. No one should be stuck in an institution. Institutions aren’t inevitable; they are always a social failure. Institutions are bad; wheelchairs are good, and wheelchair users can live in their homes as free people and have good lives.

Short version: Wheelchairs are good, but a lot of people are viscerally horrified by them. I think this is in part because people associate wheelchairs with institutionalization. They see horrible things happening to wheelchair users in institutions, and think that’s what it means to be a wheelchair user. If we want people to understand that wheelchairs are good, we need to teach them that no one needs to live in an institution.

Autism Awareness starts with acknowledging that autistic people exist and matter

Real Social Skills

The strange thing about Autism Awareness is that a lot of people raising it seem to be largely unaware that autistic people exist.

They organize all these Awareness events, and then they don’t invite us. It doesn’t even seem to occur to them that it is possible to invite us. They invite professionals, our parents, and sometimes our siblings. They say they’re raising Autism Awareness, but they don’t seem to realize that autistic people exist and have opinions on autism.

They give fancy Awareness speeches, and they speak as though no autistic people are in the room. They say things like  “Let’s imagine what it must be like to have autism and be overwhelmed with sensory information.” Or “They really need therapy so they can come to do the things that you and I take for granted.” They talk about Awareness, but seem to be unaware that autistic people are present everywhere.

They don’t reference the perspectives, accomplishments, or activism of autistic people. They don’t reference the existence of the autistic self advocacy movement. They talk about Autism Awareness, but they seem to be distinctly unaware that autistic people exist and do things.

So, for April, this is the Awareness I’m raising: Autistic people exist. We do things. Our accomplishments matter, and deserve to be respected and acknowledged. We grow up, and our adulthood needs to be taken seriously. We learn, and our thoughts are important. We are people, and it’s time to stop objectifying us. We have perspectives, and our voices matter.

Being annoying is not the same as being hostile

Real Social Skills

Everyone is annoying sometimes. Some people are painfully annoying, a lot of the time.

Being annoying isn’t the same as being mean or sadistic.

Mean people are generally annoying; annoying people aren’t necessarily mean.

Sometimes it’s impossible to avoid annoying people. Sometimes people don’t realize they’re being annoying. Sometimes people know they’re bothering others, but don’t see any alternative. Sometimes the annoying thing is physically involuntary. Some people don’t have any non-annoying ways to communicate. Sometimes being annoying is a side effect of doing something else.

There are any number of other reasons people might be annoying. Sometimes people are annoying for the sake of being annoying, but often there’s something else going on.

It helps to keep in mind that being annoying is not the same as being hostile.

Ability is complicated.

Real Social Skills

Most people have some ability to improve some of their physical or cognitive skills. The limits on this are different for different people. Sometimes trying hard over a long period of time makes things possible. Sometimes it doesn’t.

Sometimes all it takes to be able to do something is to be willing. For instance:

  • People who have unusual speech (eg, a CP accent) are often ignored.
  • Most people who aren’t listening, could decide to listen.
  • Often, willingness to slow down and listen is all it takes.
  • (Not everyone can do this — there’s no shame in being unable. Sometimes disability is like that. The problem is that a lot of people who *could* understand relatively easily, or could learn how, don’t bother to listen)

Sometimes gaining the ability to do something takes significant effort over a sustained period of time:

  • For instance, most people could not decide to wake up tomorrow and run a marathon.
  • No matter how willing or determined they were, they would fail, because it’s not an ability you can gain overnight.
  • Many people can get the ability to run a marathon, by training over time.
  • Most people who can run at all can get better at running, up to a point, whether or not they ever gain the ability to run a marathon.
  • Getting better at running takes a lot of disciplined effort over time.
  • People don’t just decide to run fast, they practice and keep pushing themselves until they get better at it.

Another aspect of running ability:

  • There is a limit, and the limit is different for everyone. Discipline and effort only take you so far.
  • Very few people will ever be able to run as well as olympic runners — no matter how much work they put into trying.
  • Bodies have absolutel limitations, and they can’t be overcome by sheer force of will.

On the other side of things, flying:

  • No one can flap their arms and fly, because it is physically impossible
  • No amount of determination or disciplined effort will make it possible for a human being to fly by flapping their arms.

It’s not always obvious which category something falls into, even for nondisabled people:

  • Sometimes limits are predictable.
  • Sometimes you can’t tell until you try.
  • Sometimes things that feel impossible turn out to actually be easy once you try.
  • And vice versa: sometimes things that feel intuitively like they should be easy turn out to be impossible.
  • Sometimes things that feel impossible at first become possible with sustained effort over time.
  • Sometimes they stay impossible.
  • Sometimes the effort they take turns out not to be worth it.
  • Ability is complicated and can be unpredictable, for everyone.

It’s often even more confusing for disabled people, for a number of reasons:

  • For many disabled people, walking is like flying — flat out physically impossible, not happening.
  • For some people, it’s like running a marathon — possible, but may or may not be worth the amount of time and effort it requires.
  • For some people, it’s similar to a failed attempt to become an olympic athlete — some progress towards the goal is possible; but it’s still not achievable.
  • It’s not always at all obvious which category something is in.
  • And that’s true of a lot of skills, in a lot of disability categories. (Including cognitive skills.)

In addition, honest discussion of what you can and can’t do is often taboo for disabled people. We’re often expected to say that we’re just like everyone else, even when we’re obviously not. We’re often expected to believe that we can do anything if we try hard enough, even when it’s obviously not true. We’re often prevented from trying anything hard that we might fail at — in a misguided attempt to spare us frustration and the pain of noticing our limitations. All of this can make self-assessment even harder.

Ability is complicated. Most people can improve some of their physical, emotional, or cognitive skills. Willingness makes some things possible. Sustained effort over time makes other things possible. Some things stay impossible no matter how hard you try. Sometimes it is clear which category something falls into; often it is not.

This is even more complicated for people with disabilities. Research and rules of thumb developed by experience with nondisabled people can give misleading results. No one can do everything, and that’s ok. Most people make mistakes about what they can and can’t do, and that’s ok too.

Disability is not a number

Real Social Skills

Disabled people are as different from each other as we are from nondisabled people. Sometimes people don’t understand this. Instead of looking at specific impairment, they look at what they think of as severity. It’s as though they’re thinking, ok, on a scale of 0-10, how disabled is this person?

This can lead to a bizarre opposite reaction to disability and disabled people. People not only respond to disability based on stereotypes, they often respond based on the stereotype of a completely different disability. 

For instance, sometimes people who think of blindness and deafness as the same level of disability will respond to blind and deaf people interchangeably. (And often in ways that wouldn’t be helpful in any case). Because they don’t think about vision or hearing, they think about a severity category. 

Eg: a waiter who thinks this way might see two people signing to each other, notice that they are deaf and bring them a braille menu. Or they might, halfway through taking an order, notice that the customer is blind — then start talking really loudly. 

They don’t pay attention to the physical reality of the person they’re interacting with. Instead of thinking about what this person’s disability is and what accommodations they need, they’re looking in a box marked something like “what to do when you meet a level-8 disabled person”.

In real life, disability isn’t quantitative, it’s qualitative. Having a disability means something physical and/or cognitive, which will be different for every disabled person. It matters what type of disability someone has. It matters how that disability affects them, specifically. It matters what their preferences are, and what they’ve found works for them. Thinking in terms of severity level won’t tell you any of the things that matter most.

Braille is not a language

Real Social Skills

Braille is not a language. Braille is a system for making printed words accessible to blind people.

All braille looks the same visually.  Braille is always read left-to-right, even in languages that are printed right to left. Languages that are printed in different alphabets still look the same in Braille.

For example, even though Hebrew and English look dramatically different in print, they look the same in Braille. This can sometimes mislead sighted people into thinking that Braille is its own language, but it is not.

The only major difference between Braille and print is that Braille uses raised dots instead of visually distinct letters. (A minor difference: Braille uses a lot of contractions to make it less verbose.)

Braille is not translation, and putting something into Braille does not change the meaning.

If an English book is brailled, it’s still in English, and it still has all of the same words. It hasn’t changed languages; it’s just been encoded in a way that makes it possible to read by feeling rather than seeing.

Short version: Braille is not a language, and brailling books doesn’t change the meaning, Braille just makes it possible to read with your hands.