Archive | Disability

Thinking About Disability

I’m still here.  Life has been incredibly full and busy.  Several people have contacted me to ask why my blog was set to private.  In a nutshell, a couple of bored teenagers found it and were using it for immature ends, so I put it on the down low for awhile.

So.  We are all settled in our new home, starting to meet people and get to know some of our neighbors.  We absolutely love it here – this was such a great move for us.  The kids are all settled in, too, and all but Finn are busy with outside activities they love.  I’ve been on the hunt for something to get Finn involved in, and I’ll tell you, it’s tough.  We have not had a lot of luck in the past finding activities that work for him – in pretty much every case because accommodations have not been readily forthcoming.

I have a feeling that he would enjoy basketball (the boy can handle a ball like nobody’s business), and I looked into our local Special Olympics for a basketball program for him, but it’s a winter sport, and I’d like to find something for him now because I think he needs an outside interest and activity for numerous reasons.  So, I’ve decided to look into horseback riding (and I don’t mean hippotherapy; I’m not looking at it as any kind of therapy or intervention.  I just want to find an activity that he enjoys).  We live in horse country – we are surrounded by acreage and pastures and farms and stables, so it seems like a natural option.

However, not every stable that offers horseback riding lessons accommodates kids with disabilities.

On a recommendation, I contacted a local stable that might have a riding program for kids with special needs.  I sent an email explaining who we are and that Finn is an 8-year-old boy with Down syndrome, and is there a possibility of Finn riding with them?  I got a very nice email back explaining that they “don’t have the equipment or level of skill necessary for severely disabled.  We only support high functioning kids.”

It left me feeling very sad.  While there isn’t anything rude or wrong, exactly, with the response (it was an honest, straightforward response born of entrenched cultural/societal views of disability), it left me wondering how exactly to respond.  Disability is a social construct; people are disabled only to the extent that accommodations and access aren’t made available.  And what, exactly, is “high functioning”?  It’s a totally subjective term.  It’s not like there’s a test that neatly and efficiently places people into these “high functioning” and “low functioning” categories; it’s largely perception.

Still, I suspect I understand what their perception of “severely disabled” and “high functioning” looks like, and if I’m right, Finn would probably fit into the latter box.  But it’s all bullshit, isn’t it?  We all have strengths, and we all have limitations.  We all excel in certain areas, and we all need extra help or support in other areas.  It saddens me to again be hit with the reality that Finn will always be most limited by other people – not by Down syndrome.

It turns out that he may have an opportunity to ride at the stable next door to us, where Annabelle and Lilah both ride – and I wasn’t asked by the proprietor there which category Finn fits into.

On “Finding Dory,” “Me Before You,” and Portrayals of Disability

Finding-Dory-Disney-pixar-2016I went to see Finding Dory yesterday.  Because I had already read a handful of blog and Facebook posts expressing negative feelings about portrayals of disability in the film, I went into the movie theater wary.  I’ve also read so much positive reception about the movie – and especially its handling of disability – that I was also eager to see it.  I sort of wish I had seen it cold – that is, without having read or heard anything about it beforehand, so that I could truly make up my own mind without being influenced by anyone else’s perceptions.

In any case, here are my thoughts, but first a brief summary:  Dory, a blue tang who was featured in 2003 blockbuster, Finding Nemo, mainly as comic relief, has some disorder that causes her to have short-term memory loss.  Finding Dory is the story of how she became separated from her parents when she was young, finally realizes years later that she once had parents who loved her very much, and goes in search of them.  Nemo and Marlin from Finding Nemo are supporting characters in this story, as well as a host of other characters, but Dory is the star.

I loved the movie.  To borrow from the lexicon of the day, it got me right in the feels.  There were numerous parts that made me tear up, and one part in particular where I had tears streaming down my cheeks and I was literally biting my tongue to keep from sobbing out loud.  Maybe it’s just me; despite my rough exterior, I’m a marshmallow on the inside.

My thoughts on the problematic parts of the story (that I’ve read about, anyway):

There is a scene in which Dory wants to join a “school” of other fish for a field trip, and she is encouraged to find something else to do, because her disability makes it too difficult for the teacher to look after her.  Yes, this scene is heart wrenching for any parent who has faced similar situations of exclusion built on excuses with their own child in school and other settings – which I have, of course, with Finn.  I think this scene did a good job of showing what that kind of exclusion looks like, and in the end, Dory does join the class, because inclusion can work when there is a willingness on everyone’s part.

Within that segment, there is a scene in which Dory gets knocked out, and the other “kids” groan when they realize she’s not dead.  I don’t know … I suppose much could be made of this, but I didn’t get the sense that anyone actually wanted Dory dead, it was more like kids using something in poor taste to try to be funny, which kids actually do.  I mean, in the end, everyone is rooting for Dory, so clearly none of them really hoped she was dead.

There is a whale shark named Destiny who is so nearsighted that she’s constantly banging into walls, and it’s delivered in a way to get laughs.  Being a severely nearsighted person myself (my prescription is -7), I guess I’ve never thought of being nearsighted as a disability.  To be nearsighted is so common that seeing a person with glasses barely registers as different from seeing a person without glasses.  So this part of the story really didn’t bother me, and I think it’s okay to laugh at ourselves and at the pitfalls of being flawed creatures to some extent.  Throughout the movie, Destiny is helped by a Beluga whale (who has suffered a head injury) who navigates for her and tries to help her avoid banging into things, so I actually think there’s a very positive message there about helping and supporting one another.

Perhaps the most glaring offense in the movie is the portrayal of Gerald, a sea lion who … I don’t know what his “condition” is supposed to be.  Because I had read something before seeing the movie about Gerald being “obviously” intellectually disabled, I saw him with that bias (which is why I wish I had seen the movie cold; I wonder how I would have perceived him without that influence).  His eyes are somewhat askew, he doesn’t speak, and he carries a child’s pail – all of which could be perceived as embodying crude and offensive stereotypes of intellectual disability.  I get it, and it did bother me somewhat, but I’m guessing not as much as it bothered some other people.  It’s possible to perceive him merely as “goofy,” put in the movie solely as comic relief.  His purpose in the story (and he’s really a minuscule part of the story) seems to be to provide the pail, which is needed to transport Marlin and Nemo from the outside of a Marine Institute to the inside (they’re searching for Dory).  I’m sure the needed pail could have turned up in any number of ways, but Gerald the intellectually disabled/goofy/drunk/I don’t know sea lion was chosen as the vehicle.  And yes, he is excluded and pushed off of a favored rock by two bigger, “normal” sea lions, but again, this type of exclusion actually happens in the real world, so why not portray it in a kid’s movie?  Maybe it gives kids a chance to see that exclusion and think about if it’s good or bad.  Also, I got the sense that the two bigger sea lions wouldn’t have let anyone else on their rock, not necessarily just Gerald.

On the other hand, if Gerald is intended to be intellectually disabled, or even if most people do perceive him that way, then yes, that’s offensive.

Overall, I think the writers did a wonderful job in their approach to disability.  The overriding message is one of inclusion and acceptance; I absolutely love the fact that never in the story is there an attempt to “fix” Dory.  Instead, her limitations are acknowledged and accepted as part of the wonderful, unique person – er, fish – she is, even if various other fish are sometimes annoyed with her (which is pretty true to life).

The theme of “family” also resonated with me.  The story illuminates the fact that “family” isn’t necessarily about who you’re related to by blood, it’s about who accepts, loves, supports you and sticks by you.  That is one of the driving forces in my life, so that message was very meaningful to me.

me-before-you-posterI wanted to also talk a bit about Me Before You.  I have not seen the movie, although I want to very much and definitely will at some point, but I did read the book and loved it.  I wrote about it here.  It seems that there has been a great deal of controversy about the movie and its portrayal of disability – particularly quadriplegia.  The movie is apparently perceived by many as deeply offensive and ableist, mainly in that (SPOILER ALERT) the quadriplegic character commits suicide.  What I have read is that many people feel that this perpetuates the idea that disabled, and particularly paralyzed, people are depressed, can’t live fulfilling lives, and who could blame them for wanting to kill themselves?

What I don’t understand is why there is all this outrage about the movie, but there was virtually none about the book – which was a bestseller, so it was widely read.  My understanding is that the movie doesn’t stray from the story presented in the book (although I’m sure the book offers a lot more detail and insight into the minds and hearts of the characters, as books generally do have that advantage over movies).  In other words, the movie doesn’t tell a story that the book didn’t already tell, so why the outrage now?

I never felt that the book presented a general picture of disability or quadriplegia.  I didn’t read it and think, “Oh, this is what it’s like to be disabled.”  Instead, what I read was , “This is what this particular kind of disability felt like to this particular character, given his particular worldview and circumstances.”  In the book, Will Traynor is an ambitious, physically active man who gets most of his fulfillment from undertaking dangerous and extremely physically challenging activities, like sky diving and mountain climbing.  There are people like that.  When he becomes paralyzed by a freak accident, that aspect of his life is gone.  To act like one under those circumstances wouldn’t have some MAJOR mental and emotional issues to deal with is foolish and disingenuous, and in my mind, it sets forth a notion that to suffer depression as a result of becoming disabled is a character flaw.  One must be stoic and positive, immediately and always, after all.  Why can’t we talk about disability honestly, and acknowledge that there are things we hope never happen to us or those we love, while still advocating for inclusion, access, and compassion?

In any case, in the book, Will decides to end his life not solely because he can no longer participate in the physical activities that once gave him so much fulfillment, but also because he is now plagued by health problems which are only going to worsen over time.  His physical suffering will increase until he finally dies, most likely from a secondary condition to his quadriplegia.

So, I very much read this as a story that advocates for self-determination and autonomy and dignity – not for seeing disabled people as feeling that their lives aren’t worth living. And I honestly felt that kudos should go to JoJo Moyes for creating a character with such notable limitations who is the love interest in the story.  Louisa, after all, falls deeply in love with Will, and spends most of the book trying to convince him to live (supporting the idea that, in fact, a disabled life is worth living).  Moyes also presents a good balance about quadriplegia and quality of life in the book when Louisa talks to numerous quadriplegic and paraplegic people on a message board, many of whom tell her how fulfilling their lives are.

Again, I haven’t seen the movie yet.  Perhaps the movie doesn’t go as deep into those issues as the book does, I don’t know.  Perhaps the real offense of the movie is casting a non-disabled actor as a disabled character.  Hollywood certainly has a great deal of work to do when it comes to inclusion: too often, non-disabled actors are cast as disabled, straight are cast as gay, and the list goes on.  Marginalized groups are certainly under- and mis-represented in film.

In the end, I am left wondering lately if in our sincere efforts to be advocates and allies, we sometimes go a little too far and look for things to be offended by in everything around us.  I’m not suggesting that we don’t go beyond the obvious and blatant, but there has to be a balance, wherein we support and lobby for equity, equality, inclusion, compassion, and access for all, without losing our sense of humor, or ourselves to cynicism.  If you look hard enough, you can find something that offends you anywhere and everywhere.  And then you’re left not being allowed to actually enjoy anything.


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