Saturday, June 02, 2012

The Finish Line

I saw something miraculous today.

Really.

It was a social gathering where the guests were people with disabilities and their care providers. In the center of the room was a huge table laden with food. There were ...

crackers and cheese
donuts
cinnamon buns
brownies
various fruit
3 different types of squares
chocolate cake
vanilla cake

... Listen carefully, hush now, be quiet and listen carefully. Hear that sound in the distance? It's a nutritionist softly weeping.

At both ends of the table there were plates set up and there were a couple of plastic bags full of plastic cutlery. The room was full to overflowing. Conversation swirled around the room. Plates were picked up, filled, refilled, set down. Fruit was passed to the right. Cake to the left. Squares danced from one corner of the table to another.

Staff.

People with disabilities.

Chatted with each other, met new people, renewed acquaintances. Just like what happens at parties. Just like any other social gathering. People left. People came. Chairs were taken, left, taken, left, as the flow in and out continued unabated. Speeches were made. Thank yous were given. Occasionally it seemed that the room, though full of hierarchies, approached the ideals of community - inclusion and welcome.

No.

This is not the miracle.

Inclusion isn't a miracle - it's a right.

Welcome isn't a miracle - it's a reasonable expectation.

The miracle was that in a room full of rich food not one voice said, in the tone of a stern guard staff, 'Hey, don't you think you've had enough,' nor 'Do you think you need that?' nor 'put that back!'

The miracle was complete because in that room full of hierarchy not one voice said, in the tone of a stern warden staff, 'WIPE YOUR MOUTH!!' 'CAREFUL YOU DON'T DROP THAT ON YOUR SHIRT' 'DON'T MAKE A MESS OF YOURSELF LIKE YOU USUALLY DO.'

No.

No one did that.

Not even once.

It's a miracle whenever those with power, upon entering a room, set it aside.

It's a miracle whenever those with power refuse to use it.

It's a miracle whenever those with power chose gentleness rather than domination.

Someone said to me, 'Are you alright?' They were worried because I had been sitting silently. I was, true, thinking of the reason behind the gathering, pondering what brought us all here to this room. But, more than that I was listening and noticing what I wasn't hearing, noticing what I wasn't seeing. I was being silently grateful to these young staff, chatting with each other and with those with disabilities in the room, simply being there to support - not scold - those who were in their care. I was grateful that those with disabilities were there relaxing, showing no fear in their fingers when they picked up a slice of cake, showing no fear in their eyes when they reached across the table for a brownie.

No fear.

That means that they are growing used to the kind of everyday freedom that none of us understand we have. There are two freedoms. The 'freedom from ...' and 'freedom to ...' Everyone knows of course that you can't get to 'to' unless you've come from 'from'.

What a long journey that has been.

It was nice to be there at the finish line.

14 comments:

Rhonda said...

I wish we could have been there.It sounds great. I struggle to find a place of inclusion for my daughter on a regular basis. A place where we are not asked a thousand questions like "Why can't she walk? Will she get better? What happened?" etc. A place where her disability is not the topic of conversation or the first thing people see. Her solution is to plug her ears. Mine is the continued pursuit of a welcome, acceptant environment filled with nothing but love and laughter.

John R. said...

This may very well be the most important post recently. I spend a large amount of time trying to do my best to model the exact behavior you are talking about to staff I work with and to the people we support. Short of someone dumping scolding tea or coffee upon themselves(safety stuff), I NEVER say a word about style of eating, what people eat etc.....

The incredible miracle of not using that hierarchical power is just that, a miracle. For what ever reasons, often well intentioned, staff think they NEED to control and guide eating time. I guess it is how they are trained and how they see their role?? Not sure...

All I can say is the nutritionist in today's blog is sitting on my porch and weeping so loudly and really mad that the staff were not using the plan they created. I think people who get served these nutrition plans shoved into their lives should get an opportunity to create plans for the people who write them.

By the way, the nutritionist is eating a Sara Lee Cheese Cake.....with bare hands!!!!! Drinking a 32 ounce Coca Cola as well...

Tamara said...

The freedom to. Miraculous indeed. I'm still the parent - as I should be - but hope and pray I can be like these staff and truly grant my son the "freedom to" when he's an adult. I have been practicing ... :-)

coffeetalk said...

My daughter dated a young man for several years who had the most atrocious table manners I've seen in a long time, (by our standards). Would we have thought to tell him to eat quieter while he was sitting at our dinner table slurping and talking with his mouth full? Never! Why is it that while working with adults with disabilities we feel that it's not only our job, but our right to impose our values on people supported? Once again I will share this post with my team.

Belinda said...

Love it, love it, love it! No more Nurse Ratched!
http://en.wikipedia.org/wiki/Nurse_Ratched

Moose said...

Oh for it to be like this in the so-called 'regular' world. A world where I, a very fat person, can go into a restaurant and not have people ask me, "Are you *sure* you want to order that?",

or see the people at the next table over stare at me for a while and then start talking about their latest "guaranteed to work" diet,

or one where when a little child runs up to me and says, "You're fat!" and the parent immediately acts like the child has said a racial slur, saying harsh words to the child and 'apologizing' to me because "we all know how hard it is to live with a 'weight problem'"

Oh, to live in a world where people are just people and not things that must be *corrected*.

Moose said...

And, sorry, a 2nd note, off the 'nutritionist' bit:

Many years ago the place I worked had big all-staff meetings twice a year. They'd offer coffee and tea and sodas and a couple trays each of cookies and pastries.

After working there for about six months I was diagnosed with diabetes. When the announcement came out for the next all-staff meeting I asked the organizer, "Could we have something like fresh fruit, too, for those who shouldn't be eating lots of baked goods?"

The day of the meeting there was the usual tables of coffee and tea and sodas and cookies and two huge fresh fruit platters.

At the end of the meeting, the coffee and hot water pots were dry, the two huge fruit platters were picked clean, and most of the cookies and pastries still sat there.

After that, there were always more fruit than baked goods. I suspect, however, that it was more that scientists and programmers don't get to see real food often enough at meetings than any real bid for health. :-)

Leah said...

Hi,
I am in middle school and use a wheelchair. My mom told me about this blog and I'm very glad she did. I admire your perspective on what we go through every day and your sense of humor. I also really liked this post about inclusion and how it's very important.

Andrea S. said...

Hi, Leah--welcome to Dave's blog! I have been reading his blog for a few years now. I am probably nearer to your mother's age (I'm 42) than to yours. Although I don't use a wheelchair, I have other disabilities: I have been deaf since birth, have attention deficit disorder, and a couple of other things that are more minor. I am very glad I have discovered this blog, also.

If you have the spare time, you might find it worthwhile to browse through his archives: many of his posts are "timeless" enough that they still have relevance even years later.

Another blog you would probably enjoy is http://ballastexistenz.wordpress.com by Amanda Baggs, an autistic woman who also uses a wheelchair (I forget if some of the time or part of the time). She writes about a lot of important ideas about the way people sometimes perceive people with disabilities and treat them, and how people SHOULD treat each other. This is another blog where it can be very well worth the time of reading through the archives. I did this when I first discovered her blog. I first found Dave's blog in part via Amanda's blog because she has occasionally written about Dave and his written works.

Another blog that is pretty good, though she has not updated it recently: Wheelchair Dancer at http://cripwheels.blogspot.com/ A lot about wheelchair dance, though not exclusively about that.

I only recently discovered a relatively new author in the blog scene who is a very powerful writer: http://juststimming.wordpress.com/ She is not a wheelchair rider like you, but she is autistic and still has a lot to say and important messages to listen to.

You can find tons more disability blogs if you browse through some past "Blogging Against Disablism Day" blog collections: http://blobolobolob.blogspot.com/2012/05/blogging-against-disablism-day-2012.html (The person who put together all these links, "The Goldfish", is also a good writer)

You can probably tell that I spend a lot of my free time reading blogs :-)

Andrea S. said...

Moose:

I too wish we could live in a world where more people would realize it's not always their job to "correct" others. I don't get lectures from random strangers like you do (though I imagine that's awful), but weight is always an on-going topic with my Mom which can get frustrating. I know she's trying to help, but although she does occasionally have pragmatic advice that is sometimes helpful, the nagging and constant questions about what I've been eating and how much exercising I've done is not so much.

Random anecdote: Once I was in a store debating with myself how many cookies I wanted to treat myself for. This involved a lot of internal wrestling: on one hand, I was struggling with five million messages from all around me saying that "over eating" was bad and I should not have the cookies at all or should only have maybe one at most. (Aside from Mom, there are all those articles in the press about obesity, weight loss ads, etc.--even if you experience just enough "thin privilege" to at least escape the looks and lectures from random strangers there's still many sources of these messages left ... though I recognize all this must be compounded many times over if you do also get the stranger lectures). On the other hand, I also was feeling just as over-bombarded not only by fat-phobic messages but also by messages saying that "more is better, why not super size this meal?" etc. kind of messages from ads, etc. So I was standing in this store wrestling with all this so I could mentally shove it all aside and focus on what *I* felt I actually wanted to have and make a choice that felt right FOR ME.

I finally arrive at a decision to order two cookies, so I do this. But instead of simply giving me the order, the woman behind the counter tries to persuade me to buy three because it is cheaper. I politely confirm that I really do want only two cookies even though it is slightly more expensive than buying three. But she keeps insisting and insisting, repeatedly. At first I am polite but firm in responding to her but become increasingly frustrated and tell her to stop. Instead of recognizing my increasing anger and apologizing, she shifts into defensive mode, claiming she was just "making sure" I understood that three cookies were slightly cheaper than two. But that does not explain why she thought she had to point it out to me more than five times and why she couldn't just let go of it once I firmly made clear that yes I understood and still wanted just the two cookies. (If you're REALLY just "making sure" then you only say it until the other person says they understand and are sticking to their decision. Then you drop the issue, since the question of whether the person understands has now been resolved, and simply go along with whatever they want even if you might not understand their choice. You don't keep repeating the same information another three or four times over after they've already said they understand.) The only reason I still bought the cookies at that store at all is because there was another employee there who was much more polite and apologized to me on her behalf (the woman never did, she only defended herself over and over). The woman did not apologize for herself at all, as if she could not see that she did anything wrong or how obnoxious she had been. If not for him and his decency and his apology (even though it wasn't really him who owed it to me, so that was nice of him), I might have walked out.

Sorry for the vent here.

Anonymous said...

I think it is wonderful when people have the freedom to make their own choices - unless they can't. Then others need to come along and assist with boundaries. Not all aides are guards or wardens - they do a job of caring for the safety of their wards. That may include hot beverages or inappropriate foods or amounts. (One has to wonder who organized this get together - did they not consider the dietary concerns?)

Doing what you want when you want is not a mark of inclusion.

It wasn't so long ago a post was made about care workers NOT watching out for those using the washrooms. Inappropriate undressing and not enough supervision was part of the problem.

Everyone needs some guidelines - some more than others. Social interaction, diet, table manners or bathroom use are practiced by everyone in all circumstance. Want to be included? May need a little help.

Utter Randomness said...

Anonymous, it isn't about being able to do whatever you want, it's about being able to make your own choices at a party. I don't see what's so bad about being able to disregard nutritionist recommendations on occasion. If it was a party for people without disabilities, would you still say that people should police each other, or would you say that it's alright to have a treat if you want one at a party? Think about it for a moment.

Jessie said...

You just gave me a LOT to think about Dave. Thanks.

nancy said...

Ooops. That is mom, not Jessie, as I seem to be signed in as Jessie. Huh! Nan