Inclusion III

I recently shared two stories about inclusion (you can read them here and here).  And now I want to share a story about exclusion.  A story about an instance in which someone with a disability could easily have been included but was thoughtlessly excluded instead, for no reason other than that a professional, who certainly should have known better, was lazy and insensitive and didn't want to be bothered.

A number of years ago, I was an inpatient in a psychiatric hospital, a hospital that specializes in treating trauma-related disorders like PTSD.  It's a great hospital, Forest View in Grand Rapids, and I highly recommend their services to anyone in need.  Most of the employees were absolutely fantastic.  This experience I'm about to write about was definitely the exception, not the rule, there.

There was another patient there at the same time I was there who was deaf.  She had lost her hearing as an adult and had adapted really well, I think, as far as I could tell, anyway.  She learned ASL and was fluent in both ASL and English (English being her first language and all).  She was smart.  She was creative.  She had a fantastic sense of humor.

She was also the only deaf patient in the hospital.  Most of the other patients and most of the staff did not sign.  The hospital provided an interpreter for her only during the day, Monday through Friday.  That's when most of the therapy took place.  That's when patients met with their psychiatrists, their individual therapists, their case managers.  That's when they had most of their group therapy sessions, too.  So definitely that was when an interpreter was most needed, but really, I believe the hospital should have provided one on weekends, too.  Probably they should have provided one around the clock.  Maybe not at night, when she was likely to be sleeping... but what if she woke up and needed something? 

Yeah, she could communicate by writing, and her English was good since it was her first language (which is not the case for many deaf people, and since ASL has very different grammar rules than English does, they may find it difficult to communicate by writing and hearing people often assume since their written English is not very good, that they are not very intelligent), but still... she probably should have had access to an interpreter around the clock.

Anyway, on the weekends, there were not as many groups or activities in the hospital, though that hospital had more stuff going on on the weekends than the last hospital I was in had on a typical weekday.  One of the activities provided on the weekends was Activity Therapy, in which a recreational therapist facilitated a recreational activity like playing a board game or other game.  I remember playing Apples to Apples once.  I don't recall offhand what other games we played.  I quit going to Activity Therapy after the experience I'm about to describe, because I decided the recreational therapist was an idiot.

So this one day, the recreational therapist (she probably had a master's degree, I'm not sure) brings this game to the group room where all the patients were waiting.  Including the deaf woman.  I can't remember the name of the game.  It was some sort of guessing game, though.  You got cards that had a word on it and had to give clues to get the other players to guess the word.  Or maybe it was a phrase, not just a single word.  I don't remember.  I didn't stick around long enough to actually play it.

As the therapist was passing out cards and explaining how the game worked, she announced that the deaf patient couldn't play.  She said that she wouldn't be able to do it.  It would be too hard for her.

I immediately objected.  It didn't seem like a difficult game.  It seemed pretty easy.  And this other patient, she was as intelligent as anyone else in the room. 

No, she couldn't understand if other players were giving the clues verbally, unless someone interpreted for her.  But there was a whiteboard on the wall.  We could have written our clues.  Or, I sign fairly fluently.  I volunteered to interpret for her, which totally was not my responsibility, the hospital should have been providing an interpreter if the therapist felt she could not participate in the session without one.  But since they hadn't provided one since it was a Sunday afternoon, I volunteered to do it.

The therapist was not interested in any of those suggestions, though.  She just kept saying it would be too difficult.  The patient, by then, was becoming uncomfortable.  She started writing on her notepad, and signing to me, that it was OK, she didn't want to play the game anyway, it was all right, she didn't need me to interpret for her, she would just sit there and sketch in her notebook while everyone else played the game.  Maybe that really was OK with her, I don't know.  It was not OK with me, though.

I got up and left the room.  I went out to the nursing station and asked my nurse how to register a complaint.  She asked what I was upset about and I told her and she seemed upset, too.  I said that the patient in question was perfectly intelligent enough to play this stupid game and the nurse agreed.  She got me a form to write my complaint on.  I'm not sure whatever came of it, if anything.

It would have been so simple to include this deaf patient in the activity.  And her insurance company was paying for her to be receiving Activity Therapy on the weekend, too.  But the recreational therapist was too lazy and just didn't care.  And we all got that message, too, loud and clear.

Inclusion II

Back when I was a social worker, I was the program coordinator for an anger management program for teens.  Both the teens and their parents participated in psychoeducational group sessions where they learned things like communication skills, assertiveness, stress management, problem solving skills, and other practical things they could do to manage their anger and to cope with anger in others.

One of my jobs as program coordinator was interviewing and assessing all new clients to determine if the program was an appropriate placement for them and to make sure program staff was aware of any special needs or challenges they brought with them.  One young man was referred to the program by his probation officer and when his mom called to schedule an appointment for an intake, she told me she would be coming to the appointment with him but that she didn't know if she could participate in the program herself because she was visually impaired.  I told her not to worry, we would make whatever accommodations were necessary so that she could participate and that we wanted her to participate because that was how she could best help her son.

It never occurred to me to exclude her due to her visual impairment.  I figured I would do whatever I could to help her participate and succeed, just like I did with all my other clients.

The mom and her son came in for their intake appointment and the first thing I always had new clients do was fill out a bunch of paperwork.  I asked her if she would like me to assist her with the paperwork or if she would like her son to do that.  She wanted her son to do it, so he did.

We went through all the standard intake stuff.  Then I explained that we often give out handouts to clients in the program and asked if she would prefer to receive that information in a large print format, in Braille, recorded on a cassette tape or in some other format.  She asked to have it on a cassette tape. 

If she'd wanted it in large print, I would have looked online to find out how large that should be and then scanned the handouts and enlarged them on my computer.  If she'd wanted it in Braille, I wasn't sure how I would do that.  There was an Associate for the Blind in the city in which I worked and I thought I would call them and ask how I might get handouts typed up in Braille.  I wasn't sure how I would do it but I was certain it could be done and that I would do whatever it took to manage it.

Since she wanted the information on cassette tape, I bought some blank tapes (this was many years ago, mind you) and read all of our standard handouts and recorded them.  I gave the facilitator of the group she was going to be in some other blank tapes and told him to make sure, if he planned to give out any other handouts, that he recorded them ahead of time for her.

I also gave him a little speech about treating her like all the other clients in the program and being receptive to any special needs or accommodations she might ask for.  I made sure he knew it was OK to use words like "see" or "watch" when talking to her, stuff like that.

I asked her, during the intake, if there were any other things she could think of that we could do to help her participate fully in the program and encouraged to her to speak to the facilitator of her group or to call me directly if she had any questions or concerns at any time.  I also checked in with her a few weeks later to make sure everything was going OK.  She said it was.

It wasn't hard to include her.  It took a little bit of extra work, recording the written information on cassette tape, but that didn't take very long.  It took a little bit of extra money, buying some blank tapes, but they were cheap.  The effort involved on my part, and on the part of the facilitator of her group, was minimal.  But I believe the benefit to her and to her son was much greater.

And that's often the case.  A minimal amount of effort, or money, can make a huge difference in the life of someone with a disability.  For instance, it would take my landlord a few second and a few pennies to tape a notice to my door instead of wedging it into the door where it will fall to the floor when I open the door.  But because he wants to save a few second and a few pennies, he continues to wedge papers into the door, even though it takes more a lot more effort to pick them up than it would take him to tape them to the door.  Inclusion, or accessibility, is often like that.

Inclusion

Many, many years ago, I worked for an agency that helped public schools and other agencies integrate kids with disabilities into typical classrooms or other settings with typical children.  "Typical" meaning "non-disabled."

One thing I found was that other kids were really good at figuring out ways to include kids with disabilities.  The idea of inclusion seemed to make more sense to them intuitively than it often did to adults.  Adults were quick to say, "Oh, he won't be able to participate" or "There's no way she can do this activity."  Not only were kids really good at figuring out how to include their peers with special needs, they were often quick to change the rules of games or invent new games to allow their peers to participate.

At one point I was working with an after school program for kids, kind of like a day camp type thing, where kids could stay after school until their parents could pick them up.  The kids got a snack, help with homework, arts and crafts, games, etc.  I was working with a little girl with cerebral palsy, maybe nine years old.  I'll call her Nancy here.

One day a group of kids was outside playing kickball.  I pushed Nancy over to the group in her wheelchair and asked if she could join them.  The kids looked uncertain.  They didn't want to exclude her but they didn't know how she could participate.  They knew she would not be able to kick the ball.  They knew she could not run around the bases.

One little boy, also about nine or ten, said, "Well... how will she play?"

I had my own ideas but decided to ask the kids first.  "Do you think there is a way we could help her play?" I asked.

The little boy that had asked how she would play thought for a minute and then suggested, "Maybe I could kick the ball for her when it's her turn?  I'm good at kicking."

I told him I thought that was a super idea.

Another kid then suggested, "Maybe you could push her around the bases?"

I told her I thought that was a super idea, too.

Note that it took them only a couple of minutes to think of these ideas, even though this was a totally new situation for them.  It had never occurred to them before that Nancy could play kickball.  But not only were they open to the idea, they were excited about helping her.  They ended up asking to take turns kicking the ball for her when it was her turn.

Now, was it much fun for Nancy, not being able to kick the ball herself?  Well, it probably would have been more fun if there had been a way she could kick the ball, but I couldn't readily think of a way to do that.  But she was outside on a beautiful sunny afternoon, being pushed fast around the bases, surrounded by a group of laughing kids that were happy to be playing with her.  It was fun.  It was a lot more fun than sitting on the sidelines watching them play while being ignored by her peers, which is what used to happen.

What's the point of this story?  Well, partly I just felt like telling it.  I thought of Nancy today for some reason and I wanted to tell the story.

But also, do you see how easy it was to include her?  And the other kids didn't mind that the rules of the game had to be changed a little.  They didn't mind that they had to do a little more work and kick the ball for her - in fact, they enjoyed that.

If it's so simple for kids, why is it so hard for adults?