Thursday, April 19, 2012

Learning Stalled (Please Read)

She waved at me. And smiled!!

A few years ago, BC (before chair), Joe and I were having dinner in our favourite Chinese restaurant in San Francisco. It's a hole in the wall kind of place on Polk Street and we've been going there for years. The last few times Joe walked in to place an order, even if we hadn't been in town for a year, they say 'Hey! Canada!' The food, in a word, astonishing. Well, we were there after the pub and before going home.

We chatted and watched as six people with disabilities came in and sat at one of the large round tables with two staff. They were fairly quiet and we soon forgot they were there. A few minutes before leaving I got up to go pee. I'd had several beer over the course of the evening and now it was time to 'spend a penny'. I walked by the table and nodded hello as friendly people do.


I've always been big.

I'm hard not to notice.

AND ... I had nodded a greeting.

I got to the door of the washroom and swung it open. This restaurant had only one washroom and it was for everyone. I turned towards to toilet to see a woman with Down Syndrome, sitting on the toilet, naked from the waist down. Yikes.

I went into reverse, since I had oiled my transmission with alcohol, I stumbled a bit. And you know what she did?

She waved!

She smiled!

I approached the table and told the staff that there was a woman with a disability in the washroom. The female staff said, 'Oh, my, I forgot, sorry.'

I said, 'The door was unlocked and I walked in on her."

Staff said, 'That's OK, she doesn't mind.'

The fact that she doesn't mind IS THE PROBLEM.

This has happened to me more than once. I've been in England and opened the door to an accessible loo at a Welcome Break and found a woman with a disability sitting on the toilet. Again, that time, she waved. I stumbled back.

Where is the shrieking!!!

How is it that women with disabilities get so comfortable at being seen naked that they aren't startled? That they aren't outraged? That they see this as a moment to MAKE A NEW FRIEND???

I know that it takes longer to teach someone with a disability toilet skills and that more people will be involved than with typical kids ... just because of how long it takes. But does anybody remember that teaching privacy is as important as teaching toileting? Girls who will be women and girls who have become women need to be taught how to be in the world that we live in. How to maximize safety, how to minimize risk.

Does anybody remember the research that says that women with intellectual disabilities are the most victimized group in our society?

Is it that they get desensitized to being naked in public because we get desensitized to seeing them in their all together? Is it that we are so busy with teaching one thing that we forget to teach the other?

The other day I was in a food court and a woman with a disability came out of the washroom, walked up to her staff, pulled her shirt up, exposing midriff and waited as the staff pulled up her zipper and did up her belt. In a food court. With people watching. Neither the staff or the woman with a disability thought for a moment that what was happening was odd. I know you are going to think that I'm making this up but I'm not ... I saw a man watching this, moving his hand quickly under the coat he had laying across his lap. I felt sick.

Women should be safe everywhere. I know. I get that.

But women aren't safe everywhere. It's wrong. But it's true.

Boundaries and bathrooms ... make the connection.


Anonymous said...


here is a little story to that from me...:

I hate to be touched and it is very difficult to me to show my body without clothes. I am not able to sleep without apropriate clothes like undies and a pyjama. It is just impossible.

When I was small I hated to be examined by doctors. It got more unconfortable when I was a teenager. But somehow something changed till today. I got used to undress before a doctor/or nurse. When exhausted and searching for medical help sometimes facts like a certain kind of shamefullness get into the background for me for "getting rid of that excruciating pain a soon as possible".

I got so used to undress in front of the "whitecoats" that something funny happend to me that let the fact come back into my mind with a heavy thud.
In germany we have a certain kind rehabilitation clinic where you go after a long period of illness or after a mayor surgery to learn the skills to live at home with your disease. For instance after a heart attack and a surgery you have to learn about nutrition and cardio sport.

I am in such a clinic for three weeks for almost every year to clean my lungs and just relax for my relaitivly stressfull work.

One time I had to go into the nurses room to get a long period echocardiogramm. And I had to sit down and simply started to undress for the procedure when a very concerned nurse rushed in and told me to stop. Turns out that I haddned noticed, that the unit was also the intensiv care unit for the clinic and had a window to a bed where an older man lay with another bout of heart attack. He nearly got another one from seeing me undress....

You see sometimes even people with just a small part of long term illness tend to get into a kind of pawlowian dog effect.

It is good to point it out. It is necessary to remember it. Not only for modesty but for protection.



Anonymous said...

I've commented on earlier blogs about the importance of education - and you have outlined a glaring example. I have found caregivers get so comfortable with the care they give that they have become not only insensitive to people around them (like the food court) forgetting those that do not live the lifestyle - and worse, the actual person in care.

I agree - it is not "cute" - it is a part of educating and preparing those that need a little more encouragment than others to embrace their whole self - physical, mental, social, spiritual and sexual - and more!Thank you so much for broaching the often overlooked subject.

Kristine said...

THANK YOU for bringing these topics up! It bothers me so much when special ed teachers/assistants are changing their students, right there un the classroom. Or openly discussing their private info for anyone to hear. I have my own traumatic memories of school bathrooms. I always needed assistance, so the school would provide an aid to help me. But they also decided that a million back-up assistants also needed to be trained to help me, just in case. And a bunch of nurses and specialists-in-I-don't-know-what needed to observe and be aware of the "procedure." There were times when 6 other people were all crowded into the bathroom with me, watching me pee. Or try to! Sometimes I just couldn't perform for a large audience, and the rest of my day would be looooong and miserable! As a very shy kid, it never occurred to me that I could say NO to that kind of treatment. The fact is, society doesn't teach people with disabilities that our bodies merit respect and dignity, and the bathroom is just one place where it's glaringly obvious.

Melissa said...

Thank you for continuing to raise awareness about important issues. Me, I'm horrified that a staff person could "forget" about a person in the toilet.

John R. said...

Between Urine Nation (last post) and this one, you have outlined a charge we have as family members, advocates, allies and supporters of people with disabilities.....privacy is not just about modesty of is CLEARLY a safety issue for people who have not been taught about the impact of their private parts on the world around them. Also, people who support people must realize the impact of sexual victimization in general.

I know several men who have a pedophilia conviction because they did not understand that exposing their private parts to a child is illegal. One instance was in a highway rest stop bathroom! There was more than likely no ill-intent for several of these men, but they did not realize the "power of the parts".

I am going to take these posts and utilize them in Orientation sessions with incoming staff to my agency. It is the newbies who will more likely see the MANDATE to teach people with disabilities to take privacy and indeed be modest....

Thanks for highlighting this and I am of the great belief that as sensitive as this subject matter is, we are obligated to teach staff to teach people this basic dignity and safety skill.

Meriah said...

It's very true.

A year ago when I was in the hospital for a week because a piece of placenta had been left in me after the homebirth of my daughter (who has Ds), I was shocked by the careless disregard for my person, shown by hospital staff. I'd be on a table, screaming in pain, with that stupid hospital gown flapping open, naked underneath but all exposed as it was flapping open. I wanted to be covered, wanted some dignity, wanted the pain to stop and the said I was being "difficult" and continued to treat me roughly.

And so. It's easy for me to imagine what goes on with those with intellectual disabilities. In hospital/medical environments in which people are so much slabs of flesh, nothing more.

ps. If you guys ever come to SF again, let me know! I'd LOVE to meet you!

Colleen said...

Dear Dave:

This discussion is so very much needed. I like John's idea of having new staff read the posts.

I am stuck though. The staff ***forgot*** this woman was in the bathroom?!?!?! I am having trouble getting past that.


Anonymous said...

This is why your "ethics of touch" lecture is so important. I saw it years ago and it made a huge impact in my career.


Anonymous said...

I recently toured a middle school as a possible placement for my son who has CP. One of the things that worried me was the comment that they do group toileting-- rationale being that "these kids learn from each other". So no closed stalls, no privacy, just a row of urinals and an open toilet in a large room-- 8 to 10 kids to go at one time. None of the parents touring was comfortable with this-- but our concerns were brushed aside with "this is preparing them for the real world, outside your homes." Thanks for a timely, practical, and wise pair of posts on bathroom skills.

Becca said...

Such a good point and reminder you make, Dave. Thank you so much. We're at a point right now where we're really trying to stop our daughter from hugging everyone. We haven't even begun to start teaching bathroom privacy, because most of the time one of us is sitting there with her (except when she slams the door on us and demands that we stand outside - I suppose she taught herself that, and for that I should be pleased). How come you're not speaking at NDSC this summer in DC??? I was so hoping to see your name on the lineup - I know there are a lot of people there who would benefit greatly from hearing you speak about these things...

Dave Hingsburger said...

Becca, I would love to speak there but haven't ever been asked. I've loved my experiences with the World Down Syndrome Congress and with speaking for both the Canadian and Irish Down Syndrome Societies, but I've never been invited to speak Stateside. Too bad, I love Washington, DC.

Myrrien said...

Oh Dave absolutely! I think Kristine's point about how personal care is dealt with in classrooms is so valid.

One of my most important memories was when I was given back my dignity by an auxilary nurse following an operation. After been treated as a piece of meat needing fixed she was given the task of giving me a shower but insisted on the shower curtain being drawn and my being covered up. Oh the return of dignity! It was something tangible and so valuable.

Why should adults with life long disabilities be treated any differently?

p.s. I am reading a book based in Toronto and I am enjoying recognising all the street names from your blog. When I read of Murdoch walking down a street I am also able to think of you wheeling your way down it as well.

Andrea S. said...

This and yesterday's post address something important that (judging by the reactions) is not often discussed.

I don't at the present time have the responsibility for teaching toileting skills to anyone and don't anticipate this changing for the foreseeable future. But as a point of curiosity:

1. How does one teach a sense of privacy/modesty without also teaching a sense of shame about the body?

2. Hypothetically speaking: suppose you were a staff person working in an environment where most of the other staff would not / do not take these issues seriously even if someone tries to talk to them about it ... you are perhaps new to the field (and thus others with more experience aren't prepared to listen to your new fangled ideas) ... or perhaps you're experienced, but others still don't listen because they see the issue of modesty as just a silly "thing" you have that isn't (in their perspective) that important. You want to teach a sense of privacy/modesty, but everybody else undermines your attempts because they still will not take these issues seriously. You try to have them close the door, other staff still just barge in or whatever. Is there a way forward in this kind of situation? It seems to me that there would need to be a commitment among the majority of staff, family, etc. around the person with intellectual disabilities to teaching a sense of modesty/privacy or else it won't really "take".

Penelope said...

I don't think this is specific to people with intellectual disabilities, either. I've met adults who've been physically disabled from birth who can toilet (including closing doors, etc.) independently, but never learned that it's important to close the door. I don't think it helps that even outside of toileting, the medical world is not set-up to support privacy. I have friends who as adolescents were forced to walk down hospital hallways in their underwear to do gait studies (couldn't wear shorts because the doctors wanted to see hips).

Not to mention that everyone knows what hospital johnnys are like. I was in the hospital last August with a surgery that meant that I really couldn't wear my own PJs/nightgowns that closed up the back and it was pure luck that I ended up in the one fully private room on the post-surgery ward. Otherwise, the first day or so I was allowed to use the bathroom, I'd have been flashing my backside to my roommate and any of their visitors. Now, to be fair, any time I had a nurse or aid with me, they worked hard to hold the back closed while I was walking, but I doubt that's the rule in most places.

Anonymous said...

Peneople, if you are in that situation re: hospital gown, ask for another and then wear it like a coat, that way both sides are covered. Been there, done that!

Katrina Stonoff said...

My 14-year-old daughter with Down syndrome would have SHRIEKED at you. Of course, she would never have failed to lock the door in the first place.