Ms. Harrari, is it you that gets to define quailty of life?

On August 6, The Sydney Morning Herald published a story entitled “Parenting an intellectually disabled child: life forever on duty” about Alex Brown and his mother Vanessa. Alex is a 22 year old man who has Sotos syndrome. He is non verbal and has an intellectual disability.

He spends week days in a group home and weekends with his mother, Vanessa.

The article, written by Fiona Harrari, documented the struggles Vanessa faces as the parent to an adult child with special needs. It painted a grim picture of life with a special needs child. Every sentence was weighed down with what felt like Harrari’s own ableist, unreflective views.

But maybe I’m jumping to conclusions. Maybe Harrari actually wanted to draw attention to the lack of supports and funding for special needs adults in their families. Maybe she wanted to highlight a vulnerable group in society that needs more attention and care? Maybe she wanted to make a real change.

Maybe. But in doing so she reinforced so many dangerous negative stereotypes and assumptions made by those who have no connection to the special needs world. Her article positively dripped with ableist rhetoric.

Every second line makes dangerous assumptions about Alex’s quality of life and his worth as a person.

Harrari introduces Alex by comparing him to neurotypical men his age. She says, “while many young men his age are at university or working, facing endless potential, Alex is immersed in an endless, limiting childhood.” She makes a mistake so many make and equates intellect with potential. Because Alex has an intellectual disability, it follows that he has no potential. He is hopeless, static, lacking.

She refers to “sadness and frustration” consuming Vanessa’s weekends that she spends with Alex. She describes their embrace when Vanessa picks up Alex for the weekend and focuses on his “limp” hands in the hug and his wordless response. She talks about the car that Alex will never be able to drive, and how he insists on “yet another” best of album as if even listening to music with Alex is a chore. Every sentence is laced with negativity, heaviness, a sense of hopelessness.

She describes the 700,000 Australians living with intellectual disability by saying that their  “odds of a rich life are slim”. Is it you, Ms. Harrari, who gets to decide what a rich life is and that these people cannot have it?

Harrari goes on to use the words “burden” and “enormous personal load” when describing Vanessa and Alex’s relationship. Alex’s brother is described as being “overshadowed” by his brother’s “dependency” and that the negative effect of his brother still “lingers” even after he now lives in a group home during the week. Hararri even seems to put the blame on Alex for Vanessa’s arthritis which it seems is exacerbated by shaving the face of her “soaring son”.

Even when Vanessa tries to tell the reporter positive things about her son, his love for budgies and pad thai and how he was a “sweet and lovely” baby, they are framed in a way that makes the reader feel sorry for her for trying to find the good in an otherwise hopeless situation. Harrari’s pity is palpable.

A piece like this, while highlighting important issues about how families of adult children with disability and special needs are not getting enough support from their communities or government, does little to change people’s perceptions of this world or make changes at a systemic level. Instead, it reinforces the ableism and negativity that is rife in our society. It reinforces the binary view of what quality of life really means and that Alex doesn’t have it. It reinforces the ideas which stood behind the killing of 19 disabled people in Japan. These people were seen by the killer, and by Harrari, as a burden.

We are told in this article how miserable Alex and Vanessa are and the source of that pain is Alex and his extra needs. While Alex’s condition may make him different, and possibly sometimes a challenge to take care of, the biggest challenges and difficulties Vanessa and Alex face, are not because Alex has Sotos Syndrome, but because in Australia and New Zealand, once a child is out of school, the support for them all but dries up. A child moves through the hospital and education systems with support in the form of therapists and educators, but when they leave school they are no longer supported in the same way. The majority of this care is handed back to the parents without consideration of the full time job that this often entails. Admitting that caring for someone like Alex is a full time job does not make his life, or his carer’s life, miserable, but ensuring those carers are doing it by themselves with little to no help, is always going to be tough.

Harrari laments the miserable weekends Alex and Vanessa spend together without commenting on how these pressures and responsibility could be eased for Vanessa. She talks about real issues in terms of legal power once a child with special needs becomes an adult, but doesn’t attribute that difficulty to a system that needs fixing, instead she reinforcing the belief that so many have that this is a life to be pitied and avoided at all costs.

If Alex and Vanessa are as unhappy as Harrari paints them, I would put money on that unhappiness stemming from a lack of help, not a lamentation on special needs. As able bodied and neurotypical members of society, we don’t get to have it both ways. We don’t get to pity their life and thank our lucky stars it’s not us, but then accept the system of supports and funding that makes their life difficult to begin with. We don’t get to say that Alex will not have a rich life, then refuse to fund the kinds of activities and programmes which might enrich his day.

We have built a world that makes having special needs and being a parent of someone with special needs difficult. We don’t get to say that Alex is the problem. We have created the problem in a world that won’t accept Alex and support his mother. We have created the problem in a world that  refuses to see his life as complete in and of itself. Alex doesn’t owe us anything. We owe him.

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