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Following the publication of Cátia Malaquias‘ article “Will there be special schools on Mars?“, Estelle Shields contacted us to offer an alternative viewpoint on inclusion and special provisions for persons with intellectual disabilities. If you want to contribute to the discussion, write a comment below the two articles, respond on Facebook and Twitter, or contact us at firstname.lastname@example.org.
Inclusion is a motherhood word. It sits with “world peace” as a worthy concept with which few would disagree. It is like “apple pie” in as much as it conjures up cosy, “feel good” connotations. Inclusion means inviting those who have been historically locked out to come in. Those may have been women, homosexuals, the aged or immigrants. Increasingly, the term is being used by the disability lobby in its bid to gain acceptance and universal access. The opposite term, “exclusion”, implies lack of welcome, unfavorable reception or a door slammed in the face. It suggests failure to gain entrance based on unfair or biased refusal. It is definitely not a “feel good” word.
Inclusion, like multiculturalism, espouses social justice. It claims the right of all of us to equal treatment and opportunity and the removal of barriers to achieve these things. However, unlike multiculturalism, it does not espouse the right to a unique and special identity within a larger group. Multiculturalism celebrates diversity and permits all to express their individual cultural heritage. Inclusion is more about burying differences by denying their significance and focusing on our universal oneness and interdependence and our equal rights to admission.
I am an expert in the business of inclusion. For nearly four decades, my son, who lives with a severe intellectual disability, has been embraced and valued in our family circle and included in almost all our activities and endeavours. He has been an integral part of our small unit and has had the same expectations and the same standards applied to him as to his siblings. On buses, trains, planes and ships he has come with us. In the front seat of the car as we drove to Perth and Darwin, he has come with us. When the country cousins come to town, he is a big part of the extended family gathering. Through celebrations and sadness, my son is included in every part of our lives. We expose him to all that life presents and shelter him from nothing.
As we all get older, it becomes more difficult to include him. He does not want to go out with his ageing parents and we don’t have as much energy as we used to have. Perhaps we need to acknowledge that recreational support workers and timely supported accommodation are the equivalent in the world of intellectual disability to accessible buildings and public transport in the physically disabled world. They are essential to the practice of inclusion.
My son is my longitudinal study and I have had ample time to observe him over the thirty-eight years that we have lived together. He interacts with a wide spectrum of people and gets on well with them all. His interests in sport and cars are totally mainstream and his work ethic would put many non-disabled people to shame. Yet the people whom he chooses to call his best friends, the people he looks forward to seeing and those he wants to ask to a party are ones who have an intellectual disability in the same range as his own. These are often people he has known all his life and they are the ones with whom he feels truly himself and totally comfortable.
Why should this surprise us? We mostly gravitate to those people with whom we have interests in common. They are often of the same intellectual level as us. The university lecturer or medical specialist doesn’t have too many truck drivers or fruit pickers in the social circle or vice versa. At the other end of the IQ spectrum, the top two percent of us are able to join Mensa. People with a physical disability congregate with alacrity on Facebook pages and blogs. The nature of humans to seek out their own is reflected in two old adages: Birds of a feather flock together and Water finds its own level. It is not remarkable that people with different ranges of intellectual disability feel drawn to other people of a similar cognitive level. These are the people who may have a similar outlook on life and with whom there is nothing to prove: they can just be themselves.
However, there is a rampant and vociferous ideology that says this sort of thinking is damaging and hurtful. It will lead to people with an intellectual disability congregating together and being segregated and isolated from the community at large. They will fail to be touched by the “feel-good” nature of inclusion and they will be set apart from the rest of us. Some of the people who subscribe to this philosophy were themselves shut away at an early age because of their high physical support needs. They have become vehemently anti-“institution” to the extent that any form of special support services designed exclusively for people with a disability has been labeled non-inclusive.
Thus we have the attack on special schools and the claim that they separate children from their peers. We have witnessed the move to group homes and their manifold failures to produce good outcomes. Now we are hearing more of individual support arrangements leading to single residency. Any form of clustered living is viewed as segregation or “rebuilding institutions” and anathema to inclusion. Currently we are watching a wage case which is a front to close down ADEs (Australian Disability Enterprises) because they are “closed” employment, open only to those with a disability. Any arena or activity that caters exclusively for people with an intellectual disability has become the target of the inclusion brigade.
This is ideology gone mad. It is also most disrespectful of people with an intellectual disability. It says that despite their support needs, they must be mainstreamed in every area of their lives. It says that schools are more about social interaction than about their education (I have heard this said on many occasions). It says that they must live in ones and twos although they may suffer extreme loneliness when they do so. Remember that these are people who often cannot speak on the phone, read or write, drive a car or interact in any way except when physically present. It says that they must find a job in the open job market in a climate where many of their non-disabled peers cannot. Mostly, it says that they are only worthwhile in as far as they become included in our world. Their value lies in their ability to adapt and conform as far as possible to the social norms of the wider society. If they fail to adapt and need specialist services, they will remain forever as “other” and “less”.
It is time that we challenge this thinking. The families who have lived with a person with an intellectual disability are, like me, experts in the field. They know the innermost thoughts and aspirations of their family member, even though their person is often not able to articulate them well. These families have the natural authority to speak on behalf of their family member and speak they must. Their years of observation and support must be acknowleged and their hard-won wisdom must be respected. How could someone with a physical or sensory disability or no disability at all know more than the families who have lived with intellectual disability for decades? How could someone who sits in an office know more than the people who have lived at close quarters with their person day and night for a lifetime? It is time that we, the experts, were heard.
There is an inverse discrimination afoot here. The right of people with an intellectual disability to be together is denied in the name of inclusion. This has happened because, to the uninitiated, a person with an intellectual disability, particularly in the severe range, can be confronting. However, if they are always just one among many non-disabled people, they can be hidden away, excused or their differences downplayed. But if there is a whole group of people with an intellectual disability, it can be more than confronting. It can be, for those unused to this group of people, startling, embarrassing, awkward or strained. Far easier to insist, in a politically correct manner, that they be “included” and thus dispersed throughout the wider community.
This will then veto any discrete community that people with an intellect disability may wish to form and any sense of belonging or identity within that community that they may feel. They have nothing in common except their disability, we are told. Yet an intellectual disability dictates a particular outlook that is often shared by others in the same place. I enjoy my friends but I don’t want to live/work/study with them, is another comment made by people who can communicate with each other in many forms and who do not need to be physically present to do so. We, the experts, have witnessed on countless occasions, the camaradie, the close friendships, the strong bonds and the silent connections that go beyond words. We have seen joyous reunions of people who have been apart for some time. Remember that this cohort rarely has a family of its own so that social life with friends assumes even greater importance than usual. Of course, people with intellectual disability are no different from the rest of us in that some people are found to be not to our liking. Sometimes there is a clash of personalities or an incompatibility. However, there is no denying that one of the roles that our people can play, in a reduced menu of roles, is that of loyal friend. And more often than not, it will be with someone who has a disability of a similar sort.
I am not condemning inclusion. As I have said, I have championed its cause for decades. I am condemning a movement that seeks to isolate my son from his natural community in its name. I want him to be able to move in the wider community and to interact with people of every sort. Then I want him to have his own special places and his own special people where he has his own sense of belonging. Is that not what we all want? I will not accept that he must be integrated and included to the extent that he must work in open employment, in a job where everyone else is far more competent. I will not accept that his special school was unsuitable for him when he learned all the life skills he needed. And I will never accept that the cluster housing model that we have designed for him and his friends is anything other than the optimum residential setting for this particular group of people.
We need to redefine inclusion. As a dairy farmer’s daughter, I appeal against the homogenizing of people with an intellectual disability. I don’t want them tucked away in ones and twos within our society, their differences denied and their services generic. I want them to be the cream on the top, with their differences celebrated in the way we acknowledge the Indigenous community, the Deaf community or the Paralympians. I want inclusion of people with a disability to be like multi-culturalism in this country, where a group is permitted to express its difference, its vividness and its identity, within the reality that We Are One But We Are Many. I am calling for balance in this debate. People with a Disability will never again be shut away from society, but neither must they be shut out of their own lives or their own communities.
[Head picture @ Indigo Skies Photography]
Estelle Shields is the mother of four sons, the eldest of whom has lived with a severe intellectual disability from birth. Estelle has campaigned for services for the disabled both locally and nationally and was a small part of the movement to establish the National Disability Insurance Scheme. She is a foundation member of RASAID, a group of families who envisioned and achieved a pioneering clustered housing development for people with an intellectual disability in the Ryde area. Estelle lives with her husband in Sydney and is rewarded daily in her career as a piano teacher.