“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell

Friday, April 24, 2009

The social integration mystery

Yesterday I went to the retirement party of a long time friend. He has worked in the field of rehabilitation for nearly 40 years. The party was crazy and fun. But as I looked around the room of about 200 people, there was no one there who had a disability. In particular, I saw no one there with an intellectual disability, the folks who were the focus of my friend's professional career. I felt a disconnect.

Over lunch, I chatted with several women who worked for an employment vendor in Riverside, CA near where I work. Because the were involved in vocational services, I spoke to them about how I feel we have missed the major point of transition for persons with disabilities. "If I asked you what was the most important thing in your life and you said your job, I would feel sorry for you" I said. "If you said your house, I would also feel sorry for you. No, the most important thing should be your family and friends, being socially integrated with other people. But work and home (although they are very important) are the major focus of efforts on behalf of persons with disabilities in the development of transition services." They nodded in agreement. One responded that there are recreation programs that the people participate in, but I countered that they are socially integrated with people who are paid to be with them. Imagine if you were socially integrated in your life only with people who are paid to be with you. They all agreed that wouldn't be desirable.

"It is our responsibility as the experts in the field to have personal relationships with people with disabilities, like the folks we work with every day. Disability needs to enter our personal lives. We talk a good game about integration, but we as the experts must model social integration for those around us, for the community. Why would others want to be socially integrated in their personal lives if we, the professionals, are unwilling to be integrated in our own lives?"

"But we can't work with our clients outside of work. We aren't permitted." That is a very typical response when you offer the idea of interactions in your private life. I always respond in a friendly but direct manner, "But you don't serve all the people with disabilities in your community at your job do you? You could clearly find other people you might interact with."

They agreed. But the next question was a shocker for me, but I also understand where it came from. One of the women said,
"Where do we find people with disabilities in the community?"
I honestly don't think she was trying to make excuses. "Maybe if we see someone in the grocery store, we can introduce ourselves" she added. A great idea, but she had earlier indicated to me that she had been in the disability world as a vocational provider for 20 years! Yet she didn't know how or where to find people with disabilities. This indicated several things to me. First, professionals like this woman, good people with a heart for their clients, had no idea about the day to day lives of these people outside of their experience at the vocational center where she worked. The people with disabilities just showed up like magic or something, and it never occurred to her, a professional to wonder about where they lived, or what their lives were like outside of the vocational setting, or whether they were happy at home, or just about anything about their lives other than their performance, their behavior at the vocational setting. I suppose she would wonder should a person show up with a bruise or a wound of some kind. Then she would wonder about the home, but otherwise, she was oblivious. Second, is the fact that a person could be a professional, could receive training and serve as a paid helper for nearly 20 years, and neither her training or her experience would indicated to her that she might have interactions with people like her clients outside of the professional setting in which she served them. No wondering about whether clients were lonely, no interaction with their personal lives whatsoever. To my mind, this is a huge hole in the training of professionals.

You see, you have many people who are literally rabid about things like full inclusion in public schools, however, they have no desire to be socially integrated with people with disabilities themselves. Parents at the birth of a child with disabilities will suddenly become full inclusion zealots, when it now affects them, however, they were clueless when the child was someone else's. Special educators lament the inflexibility of general education teachers at their efforts at inclusion. How included are the same types of people, age peers of the special ed teachers in their own lives? No we are too often hypocrites, literally saying do what I say, not what I do.

"Don't you have that church program somewhere?" one of the women asked. There had just been an article in the newspaper about the efforts my church has made to integrate people with disabilities. "Yes, I said, which is another way that you can facilitate the integration of people with disabilities." But I want to be sure to say that this is NOT a religious issue. Of course for me it is an issue of obedience for the church, however, I have spoken to many secular groups about the responsibility of professionals in the lives of people with disabilities and it has been very well received. I can speak easily to anyone independent of what they think about things religious and give the same argument, and they will respond to it, will interact with it. So I am bold about their responsibility as professionals toward people with disabilities in their communities. How through small efforts on their part, they can impact the lives of people in the community.

I have mentioned this before, but I visit a group home in my community about once a week. Sometimes I stay for a couple of hours, but like last night I was only able to stay for about a half hour. I bring ice cream bars and a bottle of coke. They tell me about their lives and I tell them about mine. Sometimes we have a catch with a baseball, or play a board game. Sadly, that may be the highlight of the week for some of those people, particularly the men who live in the home. But, I have the opportunity to be the highlight of the week for 5 people who are socially isolated, surrounded by people who are paid to be with them, in the community. Myself and those at the church are probably the only people in their lives who spend time with them because they want to, just to develop friendships and that is sad. One man repeats over and over to me, "I am your friend, Jeff. I am nice to you Jeff." "You are my friend" I respond. It is beautiful, but also kinda breaks your heart.

The retirement party was fun and I laughed a lot. But imagine it had several dozen people who had been clients of my friends, or just people he knew from his personal life who had intellectual disabilities, particularly severe intellectual disabilities like those he served. What a powerful example that would have been. How much more fun that party would have been. Instead you had a room full of caring human service workers who have dedicated their lives to people with disabilities. But there were literally NO people in the room with they types of disabilities they are used to seeing in their "clients."

For us, the professionals, people with disabilities cannot just remain "clients" they must be people as well who find their way into our lives.



Mark said...

It boggles the mind to think that professionals do not think about the personal lives of their "clients." Getting rid of that word might be a good place to change the way we think about transition, rehabilitation and similar services. When we talk about job placement we talk about teaching requsit skills, In the community we talk about appropriate behavior. You are right Jeff, we don't talk about cultivating friendships, lonliness; in fact we build walls that prevent disabled persons from making friends and make lonliness certain.

The skills and behaviors are the center of attention, not the person. I know people working in rehabilitaion services have good hearts, but they have been trained to shut them off and ignore them. Its a pity.

Anonymous said...

Dear Jeff,

I was searching for servral jobs and was interviewed and there are no success. I am 24-year-old with a disabiliy and does not have a job in my life. I am thinking about having a vocational services so I can go a non-profit
organization thats serves people with developmental disabilities to find a job successfully plus attenting some adult day services. Plese pray for me and pray for me for getting my life to God.

Thank you,

The Editor in Chief said...

I will pray for you Meg!

RachelD said...

So in June I’m starting a recreational group in Murrieta for adults with disabilities. We will meet as a group once a month (activities are planned through December). I find that a lot of the parents or caregivers are seeking facilitating friendships for their “kids” but they are afraid of calling up another parent and asking to get together. I would say that to date, I would agree that with my group the social interaction and true friendships are what’s lacking. When the bell rings and the school day ends— that doesn’t mean the education stops.
I’ve asked a parent to help me out with organizing activities—she was THRILLED to help. My hope is that members of the church, local community college, and community members (without disabilities) will WANT to be involved.
We’ll see!! Obviously in the early stages but I have BIG hopes!

Jeff McNair said...

Great idea! May God bless your efforts.

Jeff McNair said...

I also wanted to mention that it was through the exact type of group that you are proposing that I first met adults with intellectual disabilities. It made such a huge impact on me that I decided as a college freshman, that I wanted to have a career in disability! Thirty-five years later I am still at it just because of that Friday night recreation program in Wheaton Illinois back in 1974. So you may have a greater impact than just developing friendships for folks in the community who have disabilities!