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.

Some short housekeeping

I deleted a ton of users who registered for this blog.  If I deleted you, I’m sorry – please re-register.  I was getting hundreds of spam registrations per day, so I had to clean things up.  I’m also requiring a first and last name to register on this site now, as none of the spammers bothered putting one one.  I’m hopeful that requiring that will be enough to keep the bots at bay and I won’t need to turn on captchas for registration.

Blog spammers suck.

Typical. Just so typical.

I saw this newspaper article, talking about the Denver-area mass transit board of directors, entitled Disabilities Sideline RTD Members During Team Building Go-Cart Race, and have wanted to blog about it for a few days.

First, the title is a bit inaccurate.  It wasn’t disabilities that sidelined the members, but rather the attitudes and behaviors of the president of the board.

A short summary: to develop “cohesion” and teamwork on the board, a non-inclusive teambuilding activity was chosen by the board president, that left two members unable to fully participate.

A local trouble-maker (I.E. someone critical of RTD) posted this Youtube video:

RTD, or the Regional Transportation District, is the Denver mass-transit organization that manages, among other things, paratransit.  This agency has had a s storied past, with advocates using inaccessible RTD busses to pave the way for the wheelchair lifts you will see in almost all transit buses in the US today.  Of course it took lawsuits, blocking busses with bodies and wheelchairs, and generally mass disruption to make RTD put the lifts on their busses.  Every year or two since, there’s been a court case against RTD regarding inaccessible busses, broken lifts, disrespectful drivers, busses passing by disabled riders without picking them up, and even drivers lying about the working state of the lifts.  And every year or two these get settled, typically out-of-court, with promises by RTD that they will do better next time.  Except they don’t.

So, you would think that a 15 member board of directores that includes disabled members would know about the recent litigation against RTD.  Or how they cut off 120 disabled riders because they were “providing service above and beyond requirements” (link includes video) and we just couldn’t have that.  Or perhaps they would know about the disaster when RTD tried showing off their shiny new rail cars to the disabled community (in fairness, they promised – again just a promise at this point until we see how the service works – to fix those problems).  I’m not saying that RTD is bad or good here – just that board members obviously must be aware that disabled people actually exist, since at the very least these pesky disabled people have caused RTD to expend some effort.

Apparently, however, the board president is unaware of that.  Or unaware that accommodations matter.  Even for a “team building” activity (why on earth would you want to include everyone on a team building activity?).   If a disabled board member isn’t accommodated, what chance does a disabled citizen have when it comes to their transit services?

I could talk about the level of service RTD provides, as they continue to cut bus routes (and as you cut bus routes, you also cut off people who can’t use that route – RTD isn’t required to provide services to disabled riders more than a certain distance from a regular bus stop, nor required to provide that service outside of the regular bus stop’s schedule).  I could talk about the complete fiscal disaster of FastTracks (so, really RTD – you actually built a cost model that assumed tax revenue would increase over more than a decade, but building supplies and services would not change cost at all?  WTF?).  But I’m not going to.

I’m just going to say: rather than focusing on teamwork, why don’t you figure out how to involve all of the board members in the process of running RTD.  However, I imagine we’ll get little more than another promise that you’ll do better.