Just Expressing My Feelings…Let Us Hate Things Together

The comments in an article on Autistic Hoya’s site, “My Heart Breaks for Your Child,” got me thinking about how often people, when called out about awful things that are said about someone simply respond with something like, “I’m just being honest about my feelings.  I can’t help the way I feel.”

Feeling a certain way doesn’t make that thing either true or right.  If I felt that I was in danger when a hispanic family moves in next to me, that doesn’t necessarily mean that I am actually in danger (heck, I might feel safe if a white family moves in next to me, but they might actually be mass murderers).  In this case, racism is racism, even if a person is a sincere racist (really, is there any other kind?).

Maybe people who experience racism prefer people to be up front about their feelings and hope racists tell the world about their racism.  I don’t know.  But even if people prefer this, I can’t imagine that makes them like the racist, nor does it take away the ugly part inside the racist.  Even if the racist is honest and sincere.

The most common way this is expressed in the disability world is a parent (sadly, it’s often a parent) who says, “I wish I didn’t have a disabled child.”  There are two things here that need to be deconstructed a bit:

  1. Most of the time they do have a disabled child.  It is the child they have, and to not want a disabled child is to not want their child.  I can hear the screams of some readers now…”But that’s not what I mean!”  That’s fine.  I can understand that sometimes you might use the wrong words.  Now you know how your words come across, so please choose different ones.  But if you insist that these words aren’t what you mean, but continue using them, don’t expect sympathy from me.
  2. Getting past not wanting a child, what many people mean by this is that they don’t want their child to have the bad things that they associate with disability.  Fair enough – who would want any child to have bad things?  But the problem here is that you’ve confused disability and bad things.  Also, you may consider disability-associated traits from a perspective of a non-disabled person and make assumptions that aren’t actually valid from the perspective of a disabled person.

I’m not going to focus on the first point.  I don’t think most parents saying they don’t want an autistic kid (or a kid with another disability) are talking about the first point.  Generally, I’m not going to question most people on whether or not they want their child – I assume they love and cherish their child, even if they say stupid things.  But, I do ask for more precision in language however, as, sadly, there are parents that are selfish enough to neglect and abuse their disabled children because they – the parents – don’t like the impact of the disability on the parents’ lives.  I hope most parents don’t want to accidentally be grouped into that category!

So I’ll focus on the second part of this.  Your feelings if you are talking about not wanting the bad things associated with disability are an expression of your beliefs.

And it’s these beliefs that concern disabled people – because you’ll be making many, many decisions on the basis of these beliefs.  If your premise is wrong, your conclusion is going to be wrong.

Let me talk about some of the bad things that parents who say they don’t want a disabled kid mean when they say they don’t want them for their kids.

  1. Medical Issues: A child might have severe medical issues, either associated with disability or not.  For instance, a child might have a heart defect that could kill them at a young age (the child doesn’t need to be in the typical categories of disabled to have this, I might add, but that’s not really relevant here – I’ll grant some disabilities make this more likely).  I can’t imagine what it’s like to be worried about your child dying.  I wouldn’t wish that for anyone.  So, yes, I agree, that’s a fine thing to wish your child didn’t deal with.  But focus on the medical problem, not disabilities as a whole.
  2. Social Stigma and Prejudice: A lot of disabled people are badly treated by society.  This, too, is a fine thing to wish your child didn’t have to deal with.  Note however that this isn’t your child’s characteristic.  He is the victim, not the one that needs to change.  When the desire of a heart is that a person not be disabled so they won’t be mistreated, that expresses a subtle prejudice that considers the victim’s treatment inevitable if the disability remains – and inevitability means that it’s not worth trying to change things.  It’s not inevitable.  We can make the world a better place.  You don’t wish a woman who was raped was instead a man, so that she wouldn’t have experienced this horrible crime against her.  You instead wish that all men would treat women decently, that women would see justice when that doesn’t happen, and that society would take the problem seriously.  And your hope might even spur you to action, since there is no hopeless inevitability here.
  3. Loss of Opportunities: It’s also fine to wish a child had an opportunity that would be appropriate to them.  Sometimes we don’t get the chance in life that someone else might get.  This is true for all of us – maybe that company doesn’t ask you in for an interview after receiving your resume, even though you would be a great fit.  Or maybe you don’t meet up with the perfect spouse that is out there, just not where you are.  When the loss of opportunity is related to prejudice, see #2 above – it’s not the disability, it’s the bigot or prejudiced people that are at fault.  But there are two other possibilities too.  First, your child might have dreams that are unfulfilled because your child lacks the ability to fulfill those dreams, even if opportunities were given.  I’ll talk about that in #4.  Second, what I’ll talk about here, is that sometimes the lost opportunity isn’t necessarily something that the child wants.  I’m sure my dad, before I was born, pictured himself playing all sorts of sports with me.  But I’m pretty darn unathletic.  Not only that, I really had no desire to play the sports!  It was his dream, not mine.  And that’s nothing to do with my disability.  So wishing my disability away to solve it is, again, the wrong approach.  It’s his unfulfilled dream, not mine!
  4. Inability to Fulfill Dreams and Desires: I’m not talking about lost opportunities.  I’m talking about the dreams we might have that we simply will never accomplish, no matter how much we might try or how much society changes.  Unfulfilled dreams are, sadly, a part of all of our lives.  Someone might want to play pro football as a kid – but they simply aren’t professional league material.  No matter how hard they try, that dream will be unfulfilled.  For some people, that can be extremely depressing.  Part of the job of the wider community is to help people discover the things that match their aptitude, interests, and personality and provide the opportunities to pursue them, gently guiding people towards these incredible dreams.  It’s important to realize however how many greats were previously told that excelling in their field was impossible for them.  Just because I think someone can’t become a pro football player doesn’t mean I’m right!  But at the same time, how many people get to have the fairy tale life they dreamed of as kids?  Does that mean our lives all suck?
  5. Perceived Loss: I can’t imagine being blind.  I suspect a lot of parents can’t either, even if they have a blind child.  To me, thinking of losing my sight causes feelings of fear.  I think of how sad it would be to not do so many of the things I enjoy.  But, again, much of this is based on my perspective as a sighted person!  If I were to close my eyes (the best I can do to imagine the blind experience) and walk around my house, I’d break things (maybe even parts of myself!).  It would be hard.  I couldn’t get to work.  I don’t know how I would cook or take care of myself.  It would be exceptionally hard emotionally.  But of course that would be as someone with no experience being blind!  Someone who lives daily with being blind learns how to get around their house without breaking things (or themself), learns how to get to work, learns how to take care of themself, learns how to cook, etc.  Maybe some things need to be done differently, or maybe they need help that sighted people generally don’t (outside of rich people who have staff to cook and clean for them, anyway).  Of course maybe they don’t need the help that I, as a sighted person, would think they need!  Telling a blind person, “I wish my child wasn’t blind,” is saying, “My child has lost so much by not being able to see.”  That’s very likely not the blind person’s perspective – particularly if that person has accomplished many of their own dreams!
  6. I don’t want to suffer: Sometimes the parent saying this is, themselves, suffering.  They may lack support.  They may be depressed.  They may not know how they are going to get through another day.  Again, this is a problem the parent is experiencing, and that is where the focus needs to be – to help the parent, not to wish for a magical cure pill for the child.

Now, I know that there are plenty of disabled people who have internalized these messages and think, “If I wasn’t disabled, my life wouldn’t suck.”  They may even be right (although I doubt life would be as rosy as they might imagine).  But I think much of this comes from disability being a convient thing to blame for all the problems of life.   And of course these disabled people are brought out front-and-center every time this debate comes up, to show how my part of the disabled experience is invalid.  But, no, they also do not have the fullness of the disabled experience anymore than I do!  It’s only one element of the whole of disabled experience.

Nor is someone who hates their life and blames it on disability “more disabled” than everyone who loves their life.  Things don’t work that way.  Level of disability, however you categorize it, has nothing to do with happiness.  I think research here would be worthwhile – what makes a disabled person’s life better?  I say that because I see people who can do many things I can’t who hate their lives, and I see many people who can’t do many things I can who enjoy their lives.  It’s not about ability.  It’s about other things – probably the very things that matter to us all like a connection to other people (yes, even “profoundly” disabled children seek that, although it’s not necessarily recognized as what it is), a safe place to be, meeting your basic life needs, and the chance to pursue the achievable dreams.  None of this is helped by a parent expressing feelings that disability is to blame.

I know in my life, it’s pretty simple to figure out what made me happy and what made me depressed.  When I feared for my life from other kids, when I was being abused by other kids, when I experienced the shame and humiliation daily around other kids…well, I probably would have taken a magic cure pill had it been offered.  I hated who I was, after all.  Everyone (including teachers and other adults) told me that if I was someone else, I wouldn’t be experiencing this.  The victim was blamed. My disability was blamed.  I was blamed.  I imagine these people were sincere, though.

Do you know what happened when I left that town one day in the mid 1990s?  Every day – yes, every day – has been better than those days.  Even my worst day in the many years since is better than the days when I was facing that abuse.  I thank God, literally, that I made it and that I somehow retained some of who I am – my essence – through it all.

Now, I’m not saying everyone who hates being disabled does so because of bullying.   That’s not the case.  Nor am I saying my life is all wonderful and that all my problems are solved.  I still have plenty of problems.  I still have sad days.  I still have days that are miserable.  But I’ve experienced good days, wonderful times, and things that make me glad I’m alive.  No, it’s not because I’m less disabled than someone else.  It’s because I’ve had good experience and a full life.

So, when I hear disability blamed for misery, even if it is a sincere belief, I know that belief is hogwash.  It’s not about disability, it’s about other things.  Let’s hate those other things together.

Cognitive vs. Physical Disability

As part of current discussions on various laws, treaties, etc, regarding the treatment of disabled people, I’ve seen some discussion by people with physical disabilities who are questioning whether people with cognitive disabilities can or should live in the community – or whether an institution is a better place for them.

First, we need to define our terms.  Most people understand what a physical disability is, but the term “cognitive disability” is a bit harder to understand.  It is a broad term, and can include everything from dyslexia or a learning disability through mental retardation and psychiatric illness.  People usually draw a distinction between cognitive and emotional disability, but it’s still a very broad category – just like physical disability is.

One of the mantras about disability has historically been, essentially, that a physically disabled person may have a “broken” body, but has a perfectly working mind.  Of course this isn’t true – plenty of physically disabled people (who’s bodies may or may not be considered broken by themselves) also have other types of disabilities, including cognitive disabilities.  But, regardless, this is a common statement by people with physical disabilities.  It’s also common in people’s understanding and sentiments towards old-age.  How many times have you heard about someone having health issues, but heard “he’s still extremely sharp” or similar statements?  The implication is that as bad as health and physical disabilities may be for some people, as long as the mind is unaffected it is okay.  This of course means that there is a value judgement made about disabilities that affect the mind, typically without actually consulting those who have those disabilities.

Fortunately, this type of thinking is becoming less and less common among people with physical disabilities, probably due to increased visibility of the scope and breadth of the disabled community.  But it still exists.

A lot of people believe people with “broken” brains need 24×7, intensive care.  Many people believe (wrongly) that institutional care is 24×7 care.  Just because there is staff around, even at night, doesn’t make it 24×7, nor does it make it intensive care, nor does it make it one-on-one care.  People who need intense 24×7 care can’t receive that in many – if not most – institutions.  In most institutions, people are left alone and bored for long stretches at a time.  That’s not care, that’s neglect.

The reality is that most people placed in institutions do not need to be there.  Yes, I recognize that there is a place for keeping some people separated from society – but only when there is a danger that can only be mitigated this way.  Most people with cognitive disabilities are not dangerous.  They just need assistance in ways others might not.

For example, people who have cognitive disabilities might have trouble in some of the following areas:

  • Preparing meals
  • Shopping for essential, necessary items (like food)
  • Managing money
  • Completing paperwork and official forms
  • Scheduling and getting to doctor’s appointments
  • Driving and Transit usage
  • Daily grooming/bathing

Interestingly, the above list could also apply to physically disabled people, albeit for different reasons:

  • Preparing meals – motor skill issues, lack of accessible design (counters, sinks, etc, within reach)
  • Shopping for essential, necessary items (like food) – energy level, lack of accessible stores, lack of transportation
  • Managing money – Difficulty handling coins, bills, and checks.
  • Completing paperwork and official forms – motor control issues, ability to get to/from mailbox in an inaccessible residence
  • Scheduling and getting to doctor’s appointments – energy levels, accessibility of doctor’s office.
  • Driving and transit usage – inaccessible vehicles, poor scheduling of transit, space and logistical concerns around auxiliary aids
  • Daily grooming/bathing – inaccessible bathrooms and utensils, motor control difficulties, ability to reach all parts of the body

In other words, a disability – whether physical or cognitive – can affect essentially exactly the same areas of life, albeit in different ways.  And, just like with cognitive disabilities, there are all manner of abilities and lack of abilities present among people with physical disabilities – some live with only the traditional supports of society (like farmers who raise our food, which we need to survive but lack in ourselves the ability to raise), while others need intense, 24×7 assistance.

Most disability needs don’t require ICU-like 24×7 observation, whether cognitive or physical in nature.  They might require help at key parts of the day, and with key tasks.  Or, they might just need to be done differently, but still independently.

For instance, here’s how a hypothetical person with a physical disability might manage some of the tasks listed above:

  • Preparing meals – an accessible kitchen, electrical kitchen appliances, adaptive utensils
  • Shopping – shop-at-home services, accessible stores and transportation, sit-down shopping cart
  • Managing money – using debit cards, banking online
  • Complex paperwork – typewriter, computer scanner/printer
  • Getting to doctor’s appointments – accessible vehicle, accessible doctor office
  • Driving and transit usage – adaptive vehicle controls, accessible taxi, paratransit with good scheduling
  • Daily grooming/bathing – “roll-in” shower, adaptive razor and other grooming items

Of course these things won’t solve every problem, and sometimes the best solution to a problem is another person.  There’s nothing wrong with that.  But it seems people are a lot more creative when it comes to physical accommodation than cognitive accommodation.

Some cognitive accommodations for the same items:

  • Preparing meals – visual menus, visual recipe, simple recipes (minimize multitasking)
  • Shopping – shop-at-home services, shopping list (visual or written), shopping computer/tablet application (to keep in budget)
  • Managing money – specialized computer applications, “cash budgeting” or “envelope budgeting”, pre-defined shopping lists, auto-debit for routine expenses
  • Complex paperwork – simpler forms, copies of old versions of the forms (filled out), alternative processes (such as asking questions orally at the doctor’s office rather than requiring a form to be filled out)
  • Scheduling and getting to doctor’s appointments – pre-scheduled recurring appointments, taxi or good paratransit, electronic reminder devices
  • Driving and transit usage – electronic reminder devices, checklists, step-by-step directions (pictorial or written), good paratransit, taxi
  • Daily grooming/bathing – visual schedule, electronic reminder devices

Yet, for some reason, people can much easier accept someone who can’t fill out a form because of a physical disability than one who can’t fill it out because of the complex language or concepts on the form.  One is considered worth accommodating.  One is not.  But it doesn’t have to be this way.

Certainly, again, I’m not suggesting that non-traditional assistance is not required by people with cognitive (or physical) disabilities.  Obviously many people do need it!  There is nothing wrong with that, and I’m not suggesting that people should never need that.  But I am suggesting that the things people need are not always 24×7, 1-on-1, intensive care.  Sometimes they just need some help with some key tasks during their day.

There is one thing missing from most people with disability, one thing that never makes it to the lists like the ones I used above: participation in community life.  Too often, people with disabilities, whether in institutional settings or at home, end up sitting alone, lonely, and bored too much of the time.  While the internet has been a huge help to this (much as TV was to a previous generation), that’s insufficient.  Yet, other than programming without consideration for a person’s interests, desires, goals, hopes, or dreams, this is ignored or treated as baby-sitting.  I suspect solving this problem will take more support than most disabled people get today, and I’ll write more about it later.  But simply moving boredom, restrictions, and loneliness from an institution to a person’s own home is not progress – I’ll agree on that.

But I won’t agree that it has to be this way.