Every morning when I get on the bus, I wonder which direction I'll be heading. I am seeing the city, day by day, as a morning tourist. I've been to places I've never been before, seen things I'd never have seen otherwise. I like the morning mystery route being revealed moment by moment. I used to ask about the route but now just sit back and relax and let it pass me by. The same is true of my fellow passengers, some I see fairly often, some semi-regularly, some only once.
Yesterday morning we picked up a young fellow who I'd seen once before. He has an intellectual disability and, though he has few words, likes to chat. He's a nice guy, it was a nice day, we chatted. I noticed that we were travelling through a new part of the city so I knew that the next person picked up would be someone I didn't know. As it happened it was a young woman, also with an intellectual disability.
She got on the bus, very friendly greeted me and greeted the driver. She did not speak to the other person on the bus. Over the next 20 minutes or so there were two differing triads of conversations. The bus driver, the young fellow and me, being one. The bus driver, the young woman and me, being the other.
Therefore I was surprised to see that they both got out at the same stop. She got off first and said goodbye to me and to the driver. As the driver was unbuckling the other fellow, I asked him if he knew the woman who had just gotten off.
"Yes, she's nice," he said adding, "and really pretty."
"Oh," I said, a little confused at their lack of any conversation at all, not even a hello between them.
"She likes me too," he said, and I realized that I had seen her glance at him in a friendly fashion as she got off the bus.
"May I ask why you didn't talk to her when she was on the bus," I asked.
"Oh, we're not allowed to talk," he said, "we're integrated."
"Huh," this came from the driver.
"Yes, we can only talk to important people, you know, the normal ones," he said.
He got off the bus, leaving me a bit traumatised by the conversation. Why do we do what we do to people with disabilities? I understand and support people with disabilities being fully integrated into society - but to practice exclusion while calling it inclusion seems to me to be so silly that I don't know how to argue against it.
You realize that he spoke to me ... and I was sitting in a wheelchair. This means that he's learned to exclude only those who are most like himself. This means that he's beginning the process that may lead to self loathing and internalized disphobia.
This means that he's being hurt.
Badly hurt.
By people who think they are doing the world of good.
I don't know if that's irony or not but it freaking well should be criminal.
I think the program they attend is in need of an in-service presented by you and Joe. Two, actually - one for staff and one for the individuals they so poorly serve...
ReplyDeleteOh my gosh!
ReplyDeleteJulia
"a bit traumatised", no kidding.
ReplyDeleteFFS!!!
ReplyDeleteI agree with cheeselady that it sounds like the program they attend needs you & Joe (for both staff and those who attend the program).
ReplyDeleteThis is one of the saddest posts I've read in a long time.
Yet another report from the "twilight zone of disability support"....wow....this one just blows my mind. Wow....I kinda get not talking to "strangers"...or not hugging and touching people one doesn't know...but....man, to be told and also forbidden to not talk to other "integrated" people with intellectual disabilities is a recipe for great harm and is disgusting...I am bummed about this story...
ReplyDeleteDon't forget the source - you did say the young fellow has an intellectual disability - and few words. Perhaps he has misunderstood the guidelines. In his keeness of fulfilling the suggested protocol he has exceeded it - resulting in a negative effect.
ReplyDeleteNoticed even the bus driver was taken back.
I seriously doubt any facility that has worked so hard to succeed in integration would even say that the clients "can only talk to important people, you know, the normal ones." That is setting up a tier that they are working so hard to break down.
(I'm also surprised that a mentally challenged individual with minimal verbal skill used such developed language - words like integrated.)
Perhaps it is suggested that they use the "safe" environment of the supervised transit to make a point of talking to "strangers" - those who are not in the same facility. I could certainly understand such instructions - a great opportunity to dialogue with others, who probably have a greater degree of understanding - with no long term connection or committment.
Looking at it from that angle, you could understand the "instructions". I see nothing criminal about it.
Consider the sourse and don't make assumptions.
I generally don't re-comment but I am compelled by the previous anonymous comment from 7:08am
ReplyDeleteI am a "professional" in the disability support services world and I have heard, seen and participated in activities and "directives" such as Dave illustrated in this post. As for considering sources and making assumptions, one does not need to look too far into this story to see that a potential "love story" is being doused by the directives from the people in control and power as dictated to the people in the story.
And, yes...I have heard people with intellectual disabilities (or mentally challenged as the commenter stated) use words like, "integrated"....
The criminality is all about how we in "professional" capacity are inadvertently bigoted, prejudiced and although well-intentioned we sometimes act and serve people with arrogance and dangerous assumptions. This is a story about how love was not allowed to blossom because people were disabled and told not to mingle together due to that fact. Self-loathing is not too far from that directive....thus, Dave's point.
I hope I was not too harsh. Thank you.
I think the young man, despite his inability to verbally communicate, has understood the message....as did the young woman. I agree Dave, it is "criminal"....and as criminal activity...should not go unreported. I do not believe anything is coincidental.... please offer your talents to the agency and individuals they serve.
ReplyDeleteConsider the source!?! Suggesting that someone with a disability isn't a good source of information about his own life is what led to people disbelieving reports of abuse. By the way, I know several people with disabilities who have limited vocabularies and can say words like "aggressive" and "non-compliant" because THEY HEAR THEM ALL THE TIME. If this is the same anonymous person that has made other similar comments, notice that they have trouble with any posts that suggests that the "system" may get it wrong? This person, in their comment makes more assumptions than you ever do Dave.
ReplyDeleteSorry, I'm having trouble with commenting I thought my name would show with comment ten above. I've only commented a couple of times. It's Karen.
ReplyDeleteI have the same reaction to the "Don't forget the source ... " comment, Karen. But, even if that poster is right about the two people with intellectual disabilities misunderstanding what the agency was trying to convey, there's still a big problem at that agency.
ReplyDeleteBoth of these adults seem to have the same understanding. Therefore, regardless of what the agency meant to teach, it’s what they taught.
Further, and perhaps I’m reading too much between the lines, but my reading of the post by Anonymous at 7:08 makes me feel that s/he is placing "blame" on the person with the disability for misunderstanding rather than the agency for not properly communicating the message and taking steps to make sure it was understood.
Dear Dave:
ReplyDeleteI agree - it is absolutely criminal - grounding their support in disphobia and thus teaching it to the people they are supposed to be supporting - teaching them self-loathing, as you so accurately point out. And yet if you asked the staff they would probably explain that they are doing this for good reasons with the welfare of those they support in mind. We are so messed up!!!
Colleen
To "Anonymous" at 7:08 am above:
ReplyDeleteIn no particular order:
1. I suspect the only reason you view "integrated" as "developed" or advanced vocabulary is because it is a topic that perhaps you do not need to consider or discuss each day and is not a particular part of your life. BUT if you are a person with disabilities, then "integration" and being in the "mainstream" and "inclusion" and so forth are all concepts that are very pervasive in your life, they all play a huge role in how you live your life each day. Anyone who is exposed to something--no, not just exposed, but utterly immersed in it day in and day out--is certainly not going to view it as something "esoteric" that only intelligent people with big vocabularies know about. There's no reason why a person with intellectual disabilities wouldn't know and use a word like "integrated" if other people around him use it all the time.
2. I do sort of see what you're saying, or what you're trying to say. I'm sure it does happen on occasion that a person with intellectual disabilities simply misunderstands certain things. BUT, warning bells still tend to go off in my head when I see someone too quick to say, "Oh, but this cannot be! The person surely must have misunderstood!" because the arguments you raise here have been used so many times in the past to dismiss, and fail to investigate, a great many things said by people with intellectual disabilities (or by people with other types of disabilities including psychosocial/psychiatric disabilities, or by children, or by others who people commonly suspect of "not understanding" anything). And so very often this has led to all kinds of serious consequences, such as ignoring severe medical problems and situations of abuse for many years all because others are so sure that the person with intellectual disabilities can't possibly know what they are talking about. You say not to jump to conclusions, but if you are too quick to say, "The person cannot have understood!" Then THIS TOO is jumping to conclusions and is not necessarily more likely to be accurate. Allegations by people with intellectual disabilities and other developmental disabilities still must be investigated no matter how certain you are that "This cannot be as they say!" because there is always the possiblity that things ARE as they say. And that you could be wrong.
Also. Some non-disabled people DO seem to think that disabled people shouldn't be allowed to associate with each other. Sometimes they may be trying to stop romantic relationships, as John R. describes above. Or sometimes a person may be so very conscious of the real harms of segregation, and the ways this can isolate and marginalize, that they may forget that avoiding interaction with other disabled people can be just as harmful in its own way (just differently) as it would be to avoid interaction with non-disabled people. Thus some parents, staff, etc. become over-zealous about pushing "integration" to the point where disabled people end up isolated from each other. This is another reason to consider the possibility that perhaps this man has understood all too well exactly what others in his life really were trying to tell him.
Notice that the woman in this story didn't seem to initiate direct interaction with the man any more than he did with her. So if there was a "misunderstanding" here, then it is not only him who has misunderstood.
Andrea S
I have to go bang my head against a wall...
ReplyDeleteThis is just so crazy and so not right. The program they attend certainly does need an in-service and an overhaul.
ReplyDeleteIt makes me sad and so very mad.
thunk, thunk, thunk [sound of me beating my head against the desk]
ReplyDelete....this was a good one folks!! thank you Dave!!!
ReplyDeleteWhoa. That is an eye opener. A shameful and very sad eye opener. But I also have a confession.
ReplyDeleteI have a similar story, where the perpetrator was moi. It came about in fighting for my daughter's right to have a CHOICE about where she would sit at lunch in a large busy high school. We were advocating for support in making connections. School was saying they could offer no support (Jessie, at that time, was the first and only student with an intellectual disability included in classes at school; there were 2 congregated "community living" or ECL classes)but that she could sit at the tables with the other students from the ECL classes (they had to sit together) where they had supervision. WE declined that offer, and tried to iron out lunch challenges. At one point though, much later in her school career, Jessie shyly asked me if she could sit with the ECL kids sometimes. Of course! I said, and we talked about the individuals she knew etc... Then, as I probed a bit (why was she asking me?) I realized that she thought (and I would too!) that I didn't WANT her sitting with the "ECL kids." YIKES!!! That prompted a very long discussion about advocating for choice etc.... But I am SO glad she asked, because it allowed us to talk more about how difficult it was to be the first one included because you were kind of living in two worlds. We ALWAYS double-dipped in summer time (because of this challenge) she would go to so-called typical camp and later arts and leadership camp, where she was often the ONLY participant with an intellectual disability, and then she would go to a so-called "special needs" camp so that she would know the full range of her belonging and make connections in the different communities to which she belongs. It is still like that. The biggest impetus for us was when she was really interested in dating! We agreed that she really needed to hang out more with groups that had more people with intellectual disabilities in it, because if we waited for society to be fully inclusive before she got to have great choices in men, we'd be waiting a little to long for her liking!
Aaargh!!!
ReplyDeleteWords fail me!
I am the one who commented about considering the source and don't make assumptions. I still stand by what I said - yet really appreciated other points of view.
ReplyDeleteI worked for 20 years in an environment in which much was said to me, often in tears or anger, about a situation that seemed absurd - and m it was not what was meant or intended, and most the time it was NOT was accurate (like those post office games). In order to find the "truth" I had to go to the source. Usually, it was a misunderstanding of instructions that could have been made clearer.
I am not saying that someone with mental disabilities cannot make decisions and I am certainly not "blaming him" for any possible misunderstanding.
I am pointing out that Dave said that "he has few words". Yet later he seems to be portraying concepts in depth enough to rile up Dave's keen sense of justice.
We don't know the behaviours of these young people in another setting. Guidelines may have been set for a reason. All we know is what Dave observed and shared.
So - even with all your best intentions - I say consider the source and don't make assumptions.
What "behaviours" would justify these "guidelines"?
ReplyDeleteMaybe this young man wanted a girlfriend? Maybe he kissed someone? Had sex?
He is an adult. Unless he has been restricted by law enforcement due to committing a crime, how does anyone have the right to give him guidelines to correct his behaviour?
I can't even begin to respond to the absolute disrepect of saying that because he is disabled and has limited speech he can't undertand deep concepts or say certain words.
20 years of working in the field, surely you had the opportunity to get to know some people that would challenge your point of view when it comes to these things??
By no means am I trying to attack the commenter, but I encourage you to think about disabled people that you know and look at them with fresh eyes. Assume they are competent. What do you notice about them that is different than what you thought before?
I...have no words. And no I'm not going to "consider the source" and not believe this -- rather, I will "consider the source" and believe it, as I'm sure the source knows much more about his own life than some random person on the Internet ever could.
ReplyDeleteAnd the wheels on the bus go round and round :)
ReplyDeleteWOW lots to think about here. Our agency also tries to "not send out the whole house" on a group outing. Rather we break down into smaller, more personalized outings. Are we denying these folks a good time all together or helping them to "fit in" better by being less visible as a "group home"? Until today I was on the smaller, more personalized side of the fence now I am not so sure. Everyone I asked who gets to go out 1:1 or 2:1 says they like it much better than a big group, but I wonder why now. Perhaps I will join the headbangers because this situation is making my brain itch.
Have a great day all,
Donna
Perhaps they like it better than a big group, just because they like it better than a big group? I.e., I would probably always chose a smaller rather than a larger group. More intimate, more interaction. When I was going out that is!
ReplyDeleteNothing wrong with smaller groups ... as long as this is what the participants *want*. The key thing is to not force them to only go out with other PWDs just because they're PWDs ... and ALSO to not force them to only go out with non-PWDs just because they're non-PWDs.
ReplyDeleteI tend to prefer smaller groups myself. I'm introverted: I am not at all shy (for example, I have no problem speaking in front of an audience) but prefer longer, more intimate interactions with a smaller circle of people rather than short, superficial (and thus, boring, I say!) interactions with a large crowd.
Agency's always want to know how "integrated" people are. and they want to know how many friends they have that are "outside" of the agency (read non-disabled).
ReplyDeleteWe consistently give the message that non-disabled friends are more valuable than disabled friends. So what does that make people feel about their own value?
Anonymous:
ReplyDeleteHaving an intellectual disability doesn't mean you don't understand situations like this. In fact, the vast majority of people with ID understand far more than they're given credit for. That goes double for people who struggle to use spoken language. Most people I have known who can't speak at all understand perfectly well what is said to them. That is not the first assumption you should be leaping to.
I would take your concerns more seriously if they were not all pointed in one direction: Trying really hard not to believe this Is really happening. You also show very little awareness of either how the system normally works, or how cognitive disabilities normally work.
I have been in programs for developmentally disabled people for more than half my life. As a client. I'm also unable to use speech conversationally and have an appearance that leads people to believe I can't understand anything. And I do have real comprehension problems. But I still know enough to know I've seen all this before.
I've seen disabled people isolated from each other because staff thought we weren't good enough for each other. They always call that integration or inclusion. Always.
And when we speak out about anything happening to us -- or others speak out on our behalf -- someone always declines to judge, saying things like "I don't know that person's program." As if what happens to us could ever be justified. As if the people making decisions about us must always have a good reason for their latest power trips about our lives.
But I fully expect there will be some reason you can't believe me either. Even though I'm the one living it, who has witnessed these things happening all the time for no good reason at all.
I don't think it matters much to the young man whether he had been intentionally or mistakenly restricted from talking to his friend. Perhaps this guy's facility has "worked hard" to "succeed in integration"- but the bottom line is they have not worked hard enough, if he thinks "normal" people are the "important" ones. If the facility's message about integration leads their charges to believe they aren't important enough to talk to, their message is evil. It doesn't matter whether they didn't mean for him to understand it that way. If the message is that confusing to someone with disabilities, it's a bad message.
ReplyDeleteI think if you're a program for people with disabilities trying to achieve certain goals, and you go widly off the mark of those goals because, gee, our clients just aren't smart enough to understand what we're trying to do here, you've got a colossal failure on your hands. It's the facility's responsibility to teach safety, pride, and respect in whatever form actually gets that message across.