Tuesday, May 01, 2007

Blogging Against Disabilism Day

Dear Son and I were walking through the neighborhood, as we normally did, many years ago. Every day, from about April through November, I’d bundle him up and take him out for our afternoon/evening walk. As soon as I opened the front door, he’d let out a blood curdling scream, to let me know how happy he was that we were “getting out”. We’d walk through the neighborhood and then head over to the walking trail, that ran along the river. The walking trail was a paved path that was set down a bit from the neighborhood, so it was a little bit warmer, an especially nice feature on a chilly fall day. The walking trail meandered along the river and then curved around towards the south end of the neighborhood. We’d follow the loop and then walk back through the south and west end of the neighborhood, back to our house.

Dear Son loved these walks. Every year, we admired nature at the season’s best. In the spring, we’d see the fifty flowering pear trees that lined the path that ran down the center of the neighborhood. I’d talk about how beautiful the trees were, as Dear Son would listen, or so I had hoped. I was never sure how much he would take in, but I would go ahead and describe or comment on nature as we walked through the area.

Sometimes, we’d be joined by a new mother in the neighborhood, who just had her baby. She’d be full of excitement and anxious to show off her new baby in her new carriage. She’d walk with us, on and off for the first few months, until her baby began to crawl or walk and then we’d never see her again. Being in a new neighborhood at the time, this happened a lot.

I must admit I’d be a tiny bit jealous at times, as they all moved on. It was kind of like we were stuck in a time warp, as the world and the neighbors moved on, leaving us by ourselves, walking down a different path, to our own drummers.

On one particular day, we ran into mother and her children. We stopped to talk to the mother and were chatting for a few minutes when her son came up. He stopped, gave Dear Son the once over and said, “What the heck happened to him? Does he have two broken legs or something?” The mother was mortified. I simply said, “No, he can’t walk.” By that time, I knew that a simple explanation was best for that child and I didn’t need to get into any more detail.

I always kind of missed being part of the whole neighborhood thing, at least on occasion, I suppose. It wasn’t that people weren’t friendly, they certainly were, it’s just that we didn’t fit into any of the boxes. Dear Son would never play soccer, he’d never play football and he’d never play baseball. And that’s what kids did in the suburbs.

I suppose in some ways, that’s the story of being disabled. It’s about never really fitting in, never having those normal experiences like everyone else. And that’s the good part. The bad news is when just getting through the day becomes a major event because well, everything is just too hard.

I get kind of envious sometimes, and I think that as a society we are really messed up. Our priorities aren’t in the right place, like a mother whose child is obsessed with looking good at the expense of everything else. Kind of embarrassing. Take for example, our obsession with technology. We can make these seemingly small iPODs that can hold a ton of music for $150 or so and yet, we can’t make a communication device for the disabled that is affordable. Instead, we have cool new communication devices like the Tango, that cost around $7000 or so, at least the last time I checked. No, everything that is really needed it pretty expensive. What does that say about us?

Or, let’s say, these new hospitals we are building. So many beautiful buildings, outfitted with the latest technology and yet, most aren’t built with a bathroom that I can change Dear Son diapers. At fifteen, I need a changing bench to lie him on, with a screen or curtain that pulls around for privacy, in a family washroom, so I don’t have to take him into a woman’s washroom or gasp, go into a men’s washroom to change him. I’ve written about it many times before, that there aren’t bathrooms to change him when we go out or even to the doctor. Heck the last time we went to Big Academic Medical Center, he needed to be changed, and I had to ask for a place to change him. The only place that worked was an examining room, but those were busy with patients, so we couldn’t use them. We were just there for lab work, and I guess, that doesn’t count. I suspect they saw my face turning red as our 2006 billed charges of $400k flashed in my mind and yet, Dear Son wasn’t the kind of patient that could go to the bathroom in their facility, unless it was an admission, then he could be changed in his room.

Dear Son is too heavy for me to lie on the ground, to change his diaper, and he can’t weight bear, so he can’t stand up to use a regular toilet. It would be my dream, to someday, see an ad for a new hospital, with a photo of a handicapped washroom, that I could change him in, as an exceptional feature, something which sets apart that facility from their competition. So many hospitals, have their mission statement posted in the Emergency Room, with something to the effect, “that they treat their patients with dignity”. That is, unless they have to go to the washroom. In that case, only the able bodied are treated with dignity. The severely handicapped, well, you have to figure something else out.

And so I ask you today, in honor of “Blogging Against Disabilism Day” to look around at your medical facility, and see if it’s really wheelchair accessible or accessible for your severely disabled patients. Try to find one washroom in your entire facility, that you can lie a patient down to change him/her. And if you can’t, put in a request a family washroom, that all patients can use, especially for those who can’t help themselves.

*This is a photo I took last year of one of our current walking trails near our home.


Awesome Mom said...

That is pretty sad when a hospital does not have a place where you can change him.

Ruth said...

Thank you for validating the fact that getting through the day can be hard because we lack access and/or technology. Sometimes saying those things out loud is seen as "whining" . But when it results in exhaustion due to the everyday struggle, it needs to be said. Take care.

seahorse said...

I'm with Ruth. You have expressed your frustration with such eloquence and dignity, even though dignity is denied both you and your son.

Imperfect Christian said...

Bravo! Well said!! Very well said!!!

David said...

Very well put Dream Mom. Thank you.

Heidirific said...

Thanks for another wonderful post. I really enjoy reading your blog.

Dream mom, you have talked about communication a bit and I have wondered what systems have been tried with your son and if he has a formal system. There are a lot of different options out there but you are right they are generally expensive. I think it is because 1) it is a relatively small market, 2) the technology has been expensive to develop, 3) the companies can charge that much.

In most states (and I if I have ascertained yours correctly), the school districts (less preferable) or Medicaid can/will pay for AAC devices. There are also some charities that will help with the costs of devices.

Anonymous said...

Well, this is now the fourth Blogging Against Disablism entry I have read and the second time I have wiped tears from my eyes. At this rate, I'll never be able to get through all of them or even drive a car when I am done.

Bitterweet but so beautifully written. Especially about the walks.

Can't find a place to change Dear Son? In a hospital no less?
Bunch. Of. Crap.

Now I'm pissed off.

jennifergg said...

What an insightful point, Dream Mom...we talk a good talk when it comes to equality and accessability, but what you describe perfectly illustrates the point that as a society, we haven't _internalized_ these thoughts. There is much still to be done.

Sara said...

I found this very touching. The pear trees, the image of everyone else moving on while you two kept walking your own path -- lovely. Plus, you made a great point about the bathrooms.

Nicely done.

Anonymous said...

I work for a large hospital system in Portland, Oregon and I am almost 99.99% certain there are no such facilities here. Would you give me permission to copy this portion of your post so I can use it as an example when asking why we have no such place? Had my beautiful DS Christopher lived (he was 22 months when he passed) I would have been in your and DS's situation so I take this very much to heart.

Beautiful post as always...

Jamie from Oregon

Dream Mom said...


I appreciate you doing that. By making hospitals more aware, we make it easier for those children who are born from this point forward. You may certainly have permission as long as you note the source.

I send my condolences.

Anonymous said...

you are so right, a lot of it boils down to how society takes care (or not). I had a preemie who nearly died at birth and ended up with massive brain damage from no oxygen and bleeding and fluid on the brain. We had to make the painful decision whether or not to choose "heroic measures". Heartwrenchingly impossible choice but ended in loss. What really struck me was in reading about the ethics of treatment in certain scenarios, health care professionals actually admit that our society is not willing to devote resources to optimize quality of life for survivors nor provide support for their families. Guess that is too much to ask if they can't even set up a proper washroom. All the best to you and your lovely boy.

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