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Levelling the disability hierarchy

Moira Byrne Garton |  03 December 2010

WheelchairToday is the International Day of People with Disability, which aims to promote a positive image of people with disability. The day is designed to recognise and celebrate the skills, abilities and achievements of people with a disability, and their contributions to community life.

This is a welcome area of endeavour in Australia, where it frequently appears that the community views people with disabilities variously with admiration, surprise, bewilderment and fear.

In a submission to the Productivity Commission's inquiry into a disability care and support scheme, a mother and carer of a profoundly intellectually disabled adult articulated a disability 'hierarchy', which differentiates disability types according to how society perceives and accepts people with those disabilities.

People who are fully intellectually able and articulate are championed. We're amazed by Matt Hallat, a Paralympian downhill skier with one leg; by Nick Vujucic, who was born without limbs but shares his story and hope with others; by the mind and ideas of Stephen Hawking, who has cerebral palsy; and by Hilary Lister, a quadriplegic woman who sailed around the word solo.

We have every reason to be impressed. Many able-bodied people could not achieve these feats.

Similarly, people without intellectual disability but with some physical impairment are respected by the community, particularly if they work in important or high-profile roles.

Australia's Disability Discrimination and Race Discrimination Commissioner, Graeme Innes (who lives with blindness), comedian Adam Hills (who has a prosthetic leg) and broadcaster Wendy Harmer (who had a cleft palate) fit this category. Regular 'Joes' (and 'Josies') with full intellectual capacity are also accepted.

Yet acceptance is not so forthcoming for people with intellectual disabilities. Although some individuals with a mild intellectual impairment have achieved success in sport or the arts, and this is celebrated to a degree, by and large people with intellectual disabilities do not experience the same acceptance.

If a mental impairment is mild, and an individual can care for themselves, converse, form relationships and work, the lack of acceptance is not so pronounced. There are kind-hearted people who regularly engage with people with intellectual disabilities, and even foster friendships.

Unfortunately, where a mental impairment is more severe or profound, or coupled with physical disability, wider acceptance evaporates. It can be difficult to communicate with a person who does not use speech, to interact with someone who requires high levels of assistance with mobility and personal care, or engage with someone who may not have complete control of their sounds or movements.

As a result, many people with such severe or profound disabilities are avoided, ignored and rejected. They, along with their parents and carers, risk being marginalised.

The 'physical' disability lobby has been extremely successful in raising awareness of the issues faced by having a world catering only to the physically able. In fact, the physical disability lobby has been so successful that the wider community seems to forget that the disability sector includes a very significant number of people with a mental impairment, at times even alongside a physical impairment.

Why are things different for those with intellectual disabilities? Why are people with intellectual disabilities more disconnected? I feel that it is simply mainstream society's fear of the unknown.

For decades, people with intellectual disabilities were denied an education in most schools; governments did not have dedicated specialist schools. For decades, people with intellectual disabilities were institutionalised, often separated from their families. The community has been the poorer for missing out on the participation of those with intellectual disabilities.

Were that not the case, would our society be more appreciative and less competitive? More patient and empathetic? More compassionate and inclusive? I like to think that my own experience with disability has engendered these qualities in me.

The lives, abilities and achievements of individuals living with disability are as many and varied as those individuals themselves. It would be wonderful if, on this International Day of People with Disability, we could reflect on the contribution of those with intellectual disabilities too.


Moira Byrne GartonMoira Byrne Garton is a PhD student in political science at the Australian National University, and a policy analyst. She is strongly engaged with disability issues. 



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Submitted comments

Thank you, Moira, for this wonderful and very moving article.

Cassandra 03 December 2010

Thank you for this wonderful article. it is an important prompt to self-check regarding attitudes and behaviours towards people who have different capacities- something that even the most compassionate and engaged people could benefit from.

loulou 03 December 2010

Unfortunately, in Australia, the most extreme form of discrimination against people with a disability is abortion. It would seem that there is a perception that to be valued we must be perfect. How many Downs Syndrome babies are allowed to be born? We need to tackle discrimination at its root.

Jennifer Guinane 03 December 2010

Three cheers for Moira's article and three cheers for Jennifer Guinane's comment.

I am the father of baby girl, born this year with many qualities, among them Down syndrome.

Molly's presence in the world challenges all of us to reconsider what it is that we value about a human life, and what we value in each other. Which is exactly what Moira's article does too.

Raimond Gaita has some wise and penetrating thoughts about unconditional love and human beings of all sorts and types: see his book A Common Humanity, ch 1 in particular.

Cameron Johns 03 December 2010

Three cheers for Moira's article and three cheers for Jennifer Guinane's comment. I am the father of baby girl, born this year with many qualities, among them Down syndrome. Molly's presence in the world challenges all of us to reconsider what it is that we value about a human life, and what we value in each other. Which is exactly what Moira's article does too. Raimond Gaita has some wise and penetrating thoughts about unconditional love and human beings of all sorts and types: see his book A Common Humanity, ch 1 in particular.

Cameron Johns 03 December 2010

Thanks Moira, you have once again hit the nail on the head that many of us either as carer's and/or individuals face everyday.
Great piece. :)

Julie Smith 03 December 2010

Moira, as a carer for 29 years of a severely intellectually disabled person I found your article insightful and "spot on", and blessedly free of the usual cliches and motherhood statements that are commonly used whenever the subject of disability is mentioned. The gift of the intellectually disabled to the able-bodied is that they allow us to be human...they simply ask us to love them. God's blessings be with you and your family, Moira

Leanne Johns 03 December 2010

I would like to correct your article. Hilary Lister did not sail around the world solo, she sailed around Britain Solo.

Paul 03 December 2010

Thank you Moira for accurately describing this 'hidden' hierarchy. Everyday I reflect on the contribution that my beautiful little boy, born with an extra chromosome (Trisomy 21 - Down syndrome) makes to our family and to society at large. His presence and personality bring us inexpressible joy. His gifts to the world are many, in particular gentleness and love.

Virginia 03 December 2010

... decades ...?

Greig WIlliams 04 December 2010

Thank you all for your thoughtful comments.

Jennifer, you make an excellent point. In a similar vein, I have noticed that many people who support euthanasia want for the option of assisted suicide if they become disabled. It grieves me to think that people see disability as a fate worse than death!

Greig, your single word is evocative ... indeed, it has been centuries (millenia even?) that people with intellectual and multiple disabilities have been hidden away and shut in (or out, as the case may be).

And Paul, thank you for picking up my mistake. What I meant to write was not what I typed!

I also wish to correct another error. Stephen Hawking actually has amyotrophic lateral sclerosis, a form of motor neurone disease.

Moira Byrne Garton 07 December 2010

As a person with a physical disability who is doing a PhD with people with intellectual disability I wholeheartedly agree with this notion. The needs of people with intellectual disability are often neglected unless they have been given the support to advocate for themselves or have someone else speak on their behalf. Much of this is because of the enduring assumptions that surround intellectual disability. Incapacity, incompetent and dependent are but a few that prevail. These notions perpetuate the value accorded to people with intellectual disability. Thanks for a great opinion piece.

Madonna 18 December 2010

Thank you, Moira, for your article. We very much share your thoughts, that you express so eloquently. We could never find the correct words, as you have.

Paul and Bev Garton 27 December 2010

Hi, I was just wondering if you could help me with what fading prompting is, reinforcers, motivators to learn and de-motivators or blocks to learning, and how this applies to the disability sector and carers and clients please, I'm studying cert 3 in disability so I can become a better carer but I've hit a block finding answers. Thank you so much for your time, I appreciate it so much.

Linda 13 May 2011

Moira, I am glad to find some evidence I am not the only one who sees this! I am currently engaged in a great wrestling match within the disability advocacy community trying to bring this to light. As it stands now, power within this sector is completely within the physical disability sector. This means that systemic advocacy is focussed on issues such as physical access to transport and buildings, when there are people within the mental health, ID and ABI communities whose issues of abuse neglect, homelessness, etc., are not even getting a mention. As long as persons with ID, mental health, ABI, and other conditions rely on people with physical disability to raise these issues in the community, they will be waiting a long time!

Matthew Dent 23 May 2011

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