Don’t see us as disabled and others as abled
“See us for what we are”: Chandima Rajapatirana
I am glad that the idea of inclusion is taking hold of society finally. However, there is scant understanding of or willingness to provide the supports and accommodations that would make inclusion meaningful. The presumption of competence and the provision of alternative or augmentative communication (AAC) strategies for people with speech impairments are two of the more important factors needed to make inclusion work.
Inclusion is not a gift given us people with disabilities. It is our right granted by being members of the human race. It is true we do need a little extra help. However, please do not act like you are doing us a favour. The world gets benefits from our presence in it.
Dear friends, what would we have missed if Helen Keller had lived her life segregated, without a means of communication and the education she received after she became communicative? Stephen Hawking, arguably the most intelligent person alive continues to amaze us with his brilliance. He reportedly thinks he was lucky that his intelligence was recognized before he became disabled. Had he not been educated before his illness set in would we have lost a brilliant mind? Think about what that means.
Meaningful inclusion is not possible without communication. Many people with disabilities, especially those born with a disability, often do not have age appropriate speech. It is not enough for us to sit in mainstream classes; we need to be able to participate fully in the activities of the classroom. In my case that meant a facilitator had to accompany me to class even when I was in university. This was in the US and totally expected where I was living, sadly though it is not always the case even in the US.
The most valued part of inclusion for me is the possibility of having friends, classmates, colleagues, employees etc–the range of relationships that people who are able to speak take for granted. It is very hard to have a proper relationship without the ability to communicate. If one person is unable to communicate it becomes an unequal relationship. If only one person is doing the talking inevitably he becomes the decision maker. It is imperative that the non-verbal person is give a “voice.”
That we have a “voice” is especially important because too often speech is equated with intelligence. I am just thinking of my silent years. I had no verbal speech and no other means of communication either. Inside my head I had language but no means of expressing it. It was only after I became able to “talk” through Facilitated Communication Training (FCT) that I could be in a communicative relationship.
If you are to make inclusion work it is important to assume competence. As a person bitterly impacted by the absence of this in the past, I know this assumption is the foundation of enabling people to access a better life. It is important to advocate inclusion. But it must be paired with supports and accommodations that make it more than a principle.
Deaf people who used to be considered intellectually impaired changed that perception with the acceptance of sign language. Now most public events in developed countries have deaf interpreters.
Anne McDonald of Melbourne, Australia, languished in an institution for 14 years. For her good fortune and mine, Rosemary Crossley came to that institution as a young teacher. She tried various communication strategies with even the most severely disabled clients there. I suppose she assumed competence and knew the importance of communication. In 1977 Rosemary and Anne developed an augmentative communication strategy that worked for Anne.
Rosie’s strategies were good enough and Anne’s drive to communicate was strong enough that she became able to communicate. For Anne this opened a door out of the institution: to a life of her choosing, a degree in humanities from Deakin University in 1994, world travel, bungee jumping, work as an advocate for disability rights, and a prestigious award from the national parliament of Australia. Again, I say communication is the key to meaningful inclusion. Incidentally, Anne who had athetoid cerebral palsy had a severely compromised body.
The communication strategy developed by Rosemary and Anne came to be known as Facilitated Communication Training (FCT) and spread across the world and helped many of us break out of our silent prisons.
Sometimes people argue against alternative and augmentative communication (AAC) strategies for non-verbal people. There is a sad lack of awareness and training in AAC among speech therapists, teachers, and parents. Some assume that it would prevent a child from speaking. So we have a teenager with four words of speech whose parents are still being told to not try other communication strategies because it will prevent him from developing more speech. I have no polite words to express my thoughts on the strategy of keeping aperson mute so he might develop speech. Can I say it makes me furious? I can still only say a few words with my mouth, but with my hand I type poetry and this essay too.
There is an assumption that anyone who has absent or impaired speech is intellectually deficient. Friends; that too is a stupid idea. If you think my words are harsh just think of the impact such ideas have had on my life and the lives of countless others.
A well designed and implemented inclusion programme in schools can be a winning situation for all students. Unfortunately this is too often not the case. As we understand it children with disabilities are put into mainstream education classes without any preparation being offered to the teachers, principals, the mainstream students, the students with disabilities, and the parents. Teachers already burdened with dealing with too many students with assorted abilities are now expected to deal with students who often need extra attention. Some mainstream students given to bullying find easy targets among the students with disabilities. Parents of the former worry about academic standards while the parents of the latter worry about their child’s safety and emotional wellbeing. I hope someone worries about what the bullies might grow up to be.
I abhor segregation, the division of the human race into disabled and non-disabled. See us for what we are – created to be part of what makes the human race beautiful and diverse. Embracing that attitude will make inclusion a non-issue. Then we will work on what really needs to be done to ensure that everyone has a productive stimulating life.