It's Beginning to Look A Lot Like Fun*Run Time

It's ALREADY that time of year again: The ADAPT Fun*Run for Disability Rights is April 22nd 2012. Maryland's fundraising goal is $8,000 this year. Yes, that's right, $8,000

Donate $1! Donate $10! Donate $100! Donate $1,000! JUST DONATE so we can FREE OUR PEOPLE! I thank you very much for your support!

Friday, May 1, 2009

Ableism Where I'd Least Expect it: BADD 2009

I was expecting to write another r-word post. There are some issues with the use of language that I am trying to understand. Like why it is OK to use crip/ple in certain circumstances but it is NEVER ok to use retard/ed. I totally agree with that, just looking for more insight. If you click on that link you will be directed to a post from March. Maybe if you have time you can read it and help me out w/o me having to come up w/yet another post. Also, check out my April post about the stigma surrounding people w/psyc issues, something I was thinking of expanding on for today. Thinking of and then didn't. I didn't post about those things for today because I looked at my blogroll and saw that Danielle had posted about a recent visit to Jordan's ortho. I just had to comment on that post about how important it is to recognize that ALL CHILDREN are impacted by medical settings. I want to be a child life specialist (CLS), and it's my duty to do so (then I realized, when I saw that my comment was longer then her post, if I had gotten too carried away). Here's a bit about what I said CLS do (the link goes to the child life council [CLC], which may have better info):

CLS are educators. While a lot of what they do is play (I've played UNO so much as a volunteer that at one time just looking at the cards made me want to throw up) it's not just play but rather experiential education. For example, the kid I played UNO w/for MONTHS was a 10yo w/cognitive issues. We were working on him getting his colors straight.

To many, many kids the hospital or any medical setting can be a very scary place. Especially if you're having something done. Those are the kids that we think of first when we think of CL. For example, at a very young age I was traumatized by cast saws. Used to scream bloody murder anytime anyone came near me w/one. CLS have a lot of specified training and are able to explain what is going on in a developmentally appropriate way and also come up with techniques to help the child through the procedure. Glitter wands and bubbles are particularly popular for whatever reason. Maybe, had I met a CLS, I would not have screamed so much.

[image description: The words child life specilists written in funky multicolored letters encircled in words. Under this is a cartoon face of a girl and a kid w/bandages on his head. The words that encircle this are cry, talk, hold hands, be there, teach, play, laugh, encourage, paint]

But what about the kid who's sibling, aunt, uncle, cousin, parent, best friend has to be in and out of the hospital? CLS do a lot of sibling education to explain what is going on. In a case where a parent was in a severe accident and is in the ICU hooked up to a plethora of scary tubes, a CLS might take a picture of the parent to teach the kid in advance what each machine is. Maybe they're scared but won't say so. The CLS can work through play &/or art to help the kid (patient or fam member) to express themselves and will be able to clear up any misconceptions. For example, just because someone "takes your blood pressure" doesn't mean it's gone.

The timing of Danielle's post is odd. I have a Drs appt at that hospital I used to volunteer at and it's been so long since I've been over there and so long since I've volunteered... I miss it. I've been thinking about that a lot lately. Thinking about whether or not I still want to be a CLS one day (my path will be longer then most). I do. I really do. Some day. The timing of Danielle's post is also odd because it is so close to BADD. I've been thinking about what to write a lot lately too. Believe it or not, there is rampant ableism in the child life profession--where I'd least expect to see it.

I've been a student member of the CLC since Oct 2006. The best part of being a student member (the only reason to fork over that amount of $ IMHO) is the child life listserv. I have learned SO MUCH from reading emails professionals send back and forth to each other about different issues in the field. Issues that may not seem important to you, but are very important, such as whether to wear scrub pants or "street" pants. Who cares, you might ask. Well, will patients/families accidentally mistake a CLS in scrubs for a nurse? Kids are scared of nurses. But if a CLS wears street pants will people know s/he works there? You get the idea. I've heard about different techniques to use with kids, ways to get other medical professionals to realize that CLS don't just play, gotten help on school assignments, and been able to offer my own advice sometimes as well.

There is just one thing though that I wish I didn't learn through the child life list serve. I wish I didn't have to find out that CLS are much too ableist. On 2 or 3 occasions over the years someone has posted that a former patient (usually now high school age) has come to them and asked to volunteer. There are some issues inherent in that which I am just too undereducated &/or inexperienced in the field to address. One is whether high schoolers should be allowed to volunteer at all. The first hospital I volunteered in allows high school volunteers, that second one does not. Another issue is how much time should pass between when someone is no longer a patient and when they can volunteer. There could possibly be some psyc stuff surrounding the former patient's issues that could become a mess for both them and the current patients. Those issues aren't the reasons people post though. There is just one reason people post seeking advice. That reason is because the perspective volunteer is mobility impaired and open about it. If they're open about it, then why is it an issue? Especially in this field.

If a child wants to play UNO, for example, but cannot hold the cards, can they then not play? OF COURSE NOT! There are these things called card holders. That hospital had at least 4 of them. If someone wants to volunteer and they are a full time crutches user do you not let them volunteer because maybe they cannot bring toys to a kid who cannot get out of his/her room (due to lack of available hands to carry the toys in)? OF COURSE NOT! But really, that was a major reason someone posted once. This girl wants to volunteer, uses crutches, and maybe she cannot push the toy cart from room to room (did you ever stop to think that maybe she can?). SERIOUSLY PEOPLE. That was the reason she was unsure of how to deal with the potential volunteer. Maybe it's unsafe... Ever think to ASK the girl what she thought? *sigh* I'm sorry if you're a CLS or a potential CLS, found this through a Google search and think I am being harsh. Maybe the presentation could be softer, but I'm trying to make a point and this is the way I am--I'm uppity.

I just cannot understand why someone goes into a profession where figuring out new ways to do old things (UNO w/card holder) or figuring out completely new ways to use old things (medical play is BIG in CL, ever try painting w/a syringe instead of a brush?) is probably a daily occurrence, cannot then transfer the skill to use on the other side of the coin. And it's not like they have to do this by themselves. The potential volunteer is 16, 18, maybe 24, not 2. They have all this life experience behind them and have probably thought about all the same things the potential supervisor has.

Other then my general fear of being around babies (I'm very afraid of dropping one and breaking it. Babies, especially sick babies, are very fragile) I never really thought of my CP as an issue before I started reading these emails (as a volunteer, as a full-time worker I wonder how this career choice will affect my fatigue). Supervisors asked me what I can and cannot do. Can I push 2 manual chairs at once? Can I push 2 IVs at once (both attached to the same person)? I'm very upfront in my response to these inquiries. My answer is "I don't know. We'll find out." I mean, I've never tried before. How am I supposed to know? Pushing 2 chairs at once didn't cause anybody any harm, but in the future some kids will just have to wait and be brought back to the unit from the playroom in 2 trips instead of 1. It was interesting... Trying to push 2 IV poles was interesting as well, but only b/c the teen they were attached to was too impatient to walk as slow as I needed to in order to manage them. In the future, I'll just tell them to walk slow. If I thought I might be putting someone in danger (can you pick up the crying squirming baby?) I'd say so!

[image description: a barefoot bald guy in a pink hospital gown standing & holding an IV pole w/2 bags on it]

Maybe there are other reasons why a potential past patient volunteer is just not a good match. Maybe it turns out that watching other people about to get organ transplants after they just had one a year ago gives them panic attacks because they're afraid that person's won't take or that theirs will reject. If they're having panic attacks on site they can't be there until those are resolved. I get that. But to question a person's ability to effectively volunteer simply on the basis that they use a wheelchair, for example, is ridiculous. Maybe they cannot interact w/kids w/contact precautions b/c it's impossible to clean off their wheels well enough to provide top notch infection control and their hands have to touch their wheels, but that doesn't mean they can't volunteer at all, or that they'll be a danger to any patients. They just won't go in that room. Maybe that volunteer will stay in the playroom for their entire shift releaving their supervisor from playroom duty so that the supervisor can do bedsides during that time. Is that so bad? Maybe I cannot hold babies safely but a paraplegic in a chair can because their upper extremities are much more stable then mine. Don't judge a book by its cover. Don't judge a crip by their chair.

So far I've been lucky enough to volunteer places where I haven't been judged, and I sure hope that continues. I've heard stories. I won't make this post any longer by telling you the benefits of having a crip volunteer w/hospitalized children. If you're reading this through BADD you already know this and I'd be preaching to the choir. I just wish that more CLS knew what we know.


Anonymous said...

Hi Cheryl, I'm a BADD reader! I'm not in the CLS field, but I don't think you were being uppity at ALL :) I think you're totally right to say that it's insulting when able-bodied people ASSUME what a disabled person's limitations are. Or that 2 people with *apparently* the same condition or disability, can have WILDLY different abilities! I like your suggestion to able-bodied people that they should simply, respectfully ASK what another person's limitations are! That's easy enough, right???

Thanks for the reading!!

Casdok said...

To many people assume to much.
Good post :)

Anonymous said...

I have never hear of CLS and since I am a Social Worker, who works with children, I'm surprised. I LOVE the concept, it is beautiful. I do hope you get into the CLS field because you would be perfect. You have such a sensitivity and knowledge that could help child and adults alike. What a special gift you have.

I agree that people assume way too much. It makes me sad and angry. Our voices are a tool that can help bring about change.

This is a wonderful post! Keep writing. I so look forward to your posts.

Never That Easy said...

I think this is a unique perspective and a fabulous BADD post: again it has to do with making assumptions vs trusting that a person is knowledgeable about their own experience (and needs, etc), and it's sad (though not shocking) that a field so devoted to helping disabled children understand their own experiences would be so thoughtlessly ignorant of the experiences of disabled adults.

Anonymous said...

I liked this column a great deal except for the apology. Don't apologize when others are in the wrong. I have this trouble.

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