The Contributing Factor

imagesCAYA5B9RWho remembers the days of normalisation? That wonderful term of the 70’s that disability workers and activist bandied about. Normalisation was the answer. “What The Hell’s Normal Anyway” screamed the banners. This is at a time where society began to abhor the institutionalisation of people with a disability. The philosophy of normalisation was simple – People with a disability had the right to participate in society in the same way as NORMAL people. They had a right to work, they had a right to be educated, to love, to play and just enjoy life like the rest of us. They had a role to play in society. It was their choice!

The difficulty with the normalisation philosophy was and is that somewhere along the line the idea of choice got lost. Instead of being able to choose if one wanted to work if they had a disability the philosophy became one of YOU SHALL WORK! Instead of being able to choose whether you wanted to live independently or among other people with a disability the philosophy became YOU SHALL LIVE INDEPENDENTLY AND AMONG YOUR ABLE BODIED PEERS! Instead of being able to choose whether you were comfortable as a person with a disability the philosophy demanded that YOU SHALL BE NORMAL. The lack of choice in normalisation meant that the whole philosophy fell in a heap because rather than empower people with a disability being disabled was almost seen as being inferior

It is interesting because rather than promote acceptance of disability, normalisation almost made disability a taboo. Danforth and Rhodes highlight this beautifully in their paper, Deconstructing Disability[1]. They provide a beautiful example of a parent who sent their child to a mainstream pre-school for “severely handicapped” and “non disabled” I have pasted this word for word below:

After my 4-year-old daughter had been attending  the Jowonio school—a preschool program that includes students classified by the State as “severely handicapped” and “nondisabled”—for  more than half a year, she asked me, “what’s handicapped mean?” She had overheard me use the term. . . . She had attended this school for more than six months and not learned the meaning of handicapped. Apparently that was because the school staff studiously avoided using the term. Although the staff struggled for alternatives, sometimes using the not altogether satisfactory terminology of special needs, labelled, or severely involved to describe the children to others, in the classroom, they referred to them by name, not by ability or disability. The school does not organize students into ability groups. The teachers and administrators had judged the idea of “handicap” unhelpful, indeed harmful. (Biklen, 1993, p. 173)

This is what happens when normalisation goes into overdrive. It gets to a point when rather than see disability as normal it becomes completely abnormal. Rather than talk about someone that is deaf, blind, intellectually disabled and the like people begin to try and come up with the terms that are ‘nicer’. They start struggling with the language. Don’t say ‘deaf’ you say hearing challenged. Don’t say impaired, god forbid, cos no one wants to be seen as deficits do they? You don’t call someone intellectually disabled or having cerebral palsy you must use a nicer and alternate term like “special needs”.  All of this well meaning claptrap supposedly serves the purpose of normalising the person with a disability. The use of such ‘alternate realities’ actually only serves the purpose of making disability seem as a bad thing.

Danforth and Rhodes call this the Deconstruction of Disability. My own interpretation of this is where mostly non-disabled professionals break down disability in to a series of ‘nicer’ terms that totally take the focus away from disability. By doing so somehow the person with a disability becomes ‘one of us’ and therefore normal. I believe this attempted normalisation of disability actually does more harm than good.

Normalisation motivates much of Australia’s inclusion policy. For non-disabled professionals inclusion often means that people with a disability are included in the mainstream. They are included in ‘normal’ mainstream classes’ at school. Or they can just rock up at any local sporting or recreation club and they are automatically included and accepted. The actual reality is that inclusion, and indeed mainstreaming, is never that straight forward.

Just last week I had contact from a mother. The mother has a child who has an intellectual disability. The mother explained that her child loves basketball and was involved in her local basketball club. She described how being involved in the club caused her child a great deal of stress. The other kids do not really talk to her child. When her child plays the kids see her child as a burden and rarely pass the ball to her. what is worse is that at the end of the game they all go off and chat and interact and fail to include her child in any of this interaction. On weekends the mother’s child attends a ‘special needs’ basketball group where she is much more comfortable and much more happy. The child talks and interacts with her peers more readily in this group and is accepted as an equal.

Yet our society often decries the existence of the latter groups. They call this the segregation of people with a disability. For many people this segregation of disability is a bad thing. Often they will say that such alternative groups will lead to a ghetto of people with a disability. A ghetto is considered a place where minority groups gather and are often rejected by mainstream society. Of course this is an extreme view. It is almost like our disability inclusion policy is the other extreme of a ghetto. It seems Australia’s idea of inclusion is where people with a disability are included but often never fully accepted and often never really fully participating.

Now I do not advocate a society where people with a disability are totally segregated. Inclusion is a great thing but this inclusion must involve choice. You see inclusion is not just about participating it is also about contributing and interacting. It is often unrealistic to expect the person with a disability to be able to rock-up and automatically to feel a part of the group. As a deaf person I know this very well.

I know very few deaf people who love gatherings of people who are solely hearing. They will talk about those awful family gatherings where they were not part of the conversation. They will tell you how awkward it feels when someone decides to take petty on them and tries to strike up a conversation. This conversation often ends in an uncomfortable silence. They will tell you about the basketball game where they scored a few points and went straight home because socialising with ‘hearing peers’ after the game is just too stressful. Many, many will tell you about how much more comfortable they feel amongst their own, where their communication needs are fully met and they are not constantly struggling to communicate.

The problem with normalisation and mainstreaming is it does not consider how psychologically harmful it can be to be part of a group but actually not part of it. It is not enough for the person with physical limitations to just have the ball thrown at them a couple of times and get a pat on the back. It is not enough just to play. Individuals want to feel they belong and that they can contribute. For many this is by interacting with the people of similar ability and intellect. For many it is about interacting with people they can relate to. For many it is about interacting with people they can communicate with. To interact and socialise with others who have a disability is completely normal but often scorned. 

We need to re-think our policy of inclusion. What our inclusion policy currently lacks is philosophy of CONTRIBUTION. Interestingly if you Google “disability and contribution”  you get sent to links about contributing to disability insurance or how contribute to a charity for the disabled.  Here lies the problem. This is how many in our society thinks. They think that disability is something that needs to be controlled and helped. Our society has not yet fully understood what inclusion really means.

Inclusion is nothing without a proper contribution. Perhaps we need to develop a policy of inclusion that stresses CONTRIBUTION. The Oxford dictionary defines contribution as, “the part played by a person or thing in bringing about a result or helping something to advance.” In other words taking part involves playing a REAL part in the end product. It’s all about being a contributing factor!

 

 

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3 thoughts on “The Contributing Factor

  1. Thankyou for such a truthful and accurate post. One cannot participate and be included if they have no idea at all of what is going on.

    I know parents of a teenager with an intellectual disability. They did the “right” thing and sent her to a mainstream school. She had a full time aide, and the aide became her teacher. She had no idea at all of what the class was doing and could not comprehend 99% of what was said. As the years went by the differences in ability became larger and larger and larger. She spent her time with the aide, at the side of the room, while the class had discussions, debates and the like. No one could include the child, as she could not comprehend what was going on. Finally at the beginning of Year 10 they moved her to a special school, against all the advice of everyone, with people telling them how far backwards there daughter would become, etc. Could not be further from the truth. She is now in a class with like minded peers, where she can participate in class discussions and debates and do the group projects that everyone else take for granted. Sure they might be done at an early primary school level, but they are still learning those vital communication skills, which she could not learn at the mainstream school, as she could not understand what was being done. It is beyond me how it can possibly be seem as educational for a person with the average developmental level of a 7 year old to be sitting in a year 12 class studying accounting, chemistry, legal studies or the like. But inclusion has come to mean shoving them in the mainstream, even if they have no idea of what is going on.

    These parents don’t actually want the child in a seperate school, they do however want her in a seperate class, for most of the school day, so she can learn the vital communication skills and problem solving skills so essentail for doing group work and participating in society. They want her to learn to live as a person with a disability in the able bodied world, not to be ashamed of it. She is now doing work experience, something that would not be being done at the mainstream school, which is preparing them all for university study. That is of no relevence to her. What she is now learning is that there are multiple jobs that she can do and that she has strengths which can benefit society. Sitting at the side of a mainstream classroom with an attendent carer to teach them, was not allowing her to find out what she was good at. It did not give her access to special education teachers that could support her development to the full, instead of the babysitting she was getting.

    She also now has a wide group of friends, whom she has a great deal in common with and not people who feel compelled to spend some time with her, because they feel sorry for her. She is able to enjoy children’s movies, with her friends who also enjoy them, they go to public places together and do normal things, they just do things at a different level, in a different way.

    As a person with a disabilty, I also want to be able to spend time with like minded people, who have similar day to day experiences as I do. I also wish to be part of the real world. I have friends in both worlds, and get really annoyed when people think my being in a disability group is somehow something I should be ashamed of. Why should I be ashamed of being in a group of people like me. There are men’s groups and women’s groups, gay groups, children’s groups, teeenagers groups, seniors groups. Why should I be any different. I do however have the advantage of being able to participate in general adult conversations, and to understand the world like the average person.

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