I don’t know if any of you watched the most recent (3/10/16) episode of Australian Story. It was a doozy. The story was about two young adults, Michael and Taylor, who are in love and want to get married, move in together and have children.
Here’s the kicker, though. They happen to have Down Syndrome, which seems to make things a little complicated. And, unfortunately, ableist.
Reminder: ableist/ableism = prejudice/discrimination against people with disabilities (PWD). Often involves thinking for or about PWD instead of with them – i.e. reducing a disabled person’s agency/ability to act for their own selves in a situation by taking away their choice/s.
I’m sorry to say that this is what was happening in the program. I have no doubt that the parents of Michael and Taylor mean well. They’ve obviously done a good job of raising the young adults, who seem very lovely. They obviously care for their children. I even think that at least some of the concerns raised are valid. However. They are only valid in the sense that they apply to all young people (disabled or not) at some point or other as we negotiate relationships, identity and life decisions. Questions of maturity will be asked at times, as will other questions, for any number of reasons – out of concern; natural parental etc. worries (exacerbated in different ways for different families due to individual situations); or simply because you can’t please everyone, to name a few.
The difficulty of the situation outlined in the program is that Michael and Taylor’s neuro-diversity means they find certain things difficult that others just take for granted. This is unfortunately where the ableism I mentioned earlier comes in.
Claire Pullen has brilliantly dissected the situation here, for Daily Life. Read the article, please. She articulates things far better than I could – at one point while reading it, I exclaimed aloud, “Exactly! Oh my gosh, YES!” and I had a lump in my throat by the end of it, due to her eloquence.
As she articulates, the problem with how Michael and Taylor’s situation is discussed is that, in their concern, their parents have asked questions of them that amount to hoops that non-disabled adults are not asked to jump through before being “allowed” to move in together and have children. The crux of the matter is that Michael and Taylor are not being given very much agency in this…their parents’ worries have led them to control the situation. This control includes speculating about whether one or both of the young adults could be prevented from having children in a permanent fashion, through sterilisation!
To put it another way, here is part of a statement from Downs Syndrome Australia (full statement via this link – scroll to the last heading on the page) about this:
“Down Syndrome Australia believes that people with Down syndrome should be supported to have the same rights, responsibilities and opportunities as other people in the community, including in making decisions about who to marry and whether or not to have children. The UN Convention on the Rights of Persons with Disability Article 23 specifically protects the rights of people with disabilities to make decisions about whether or not to have children.
People with Down syndrome may need additional support and appropriate information before making a decision about whether or not to have a child. This may include consideration of what services and support will be available after the child is born and how they will meet the needs of a child. These are the same issues that people without a disability also need to consider before deciding to have a child.
Families may not always agree with the decision of the person with Down syndrome but as adults they have the right to make that decision regardless.“
I have highlighted in red the part that I feel is the most important.
Simply, where is “the village” in this situation? The parents of Michael and Taylor are “not ready” to “let” their children go. They worry the burden of care of any children will fall on them. These are concerns that need airing, along with those about maturity and so on, so that the right support can be found. There would be ways of testing the maturity levels of the young adults (particularly Taylor, as her parents seem to be most concerned about that aspect), surely. Also, help can be (and seemingly is being) provided to help the young adults work through scenarios to ensure that they aren’t just following some “unrealistic” dream (as their parents fear they are).
Couldn’t these issues be addressed through the NDIS and other community support? It doesn’t have to be all-or-nothing. No-one, whether they are disabled or neurotypical/physically-able, parents in isolation. Humans are social – we help each other, don’t we?
Let me be clear, I’m not blaming the parents. They are sincere in caring about their children and want what’s best for them. But their current approach of control is unfortunately not the best one – what’s “best” in one person’s/group’s eyes is not what’s best in another’s. As Claire Pullen puts it (with my emphasis in red again),
“…I feel for Taylor and Michael’s parents. It was clear they feel a high degree of obligation and responsibility for their adult children, and the prospect of doing it all again for grandchildren is not appealing. But this has led to situations like telling the couple they can have just one daytime date per month, and could talk about their engagement in five years.
Contrary to the parents though, I don’t agree they “have to” have this much control and involvement in their children’s lives.”
Unfortunately, from what I’ve seen from comments online and things, it’s a shared problem. The situation on Australian Story the other night was just one example of how disability frequently means agency being removed/not given or assumed. This supports the idea of the social model of disability, as opposed to the medical one.
A quote from Persons With Disabilities Australia, below, explains the distinction.
“The social model of disability contrasts with what is called the medical model of disability.
According to the medical model of disability, ‘disability’ is a health condition dealt with by medical professionals. People with disability are thought to be different to ‘what is normal’or abnormal. ‘Disability’ is seen ‘to be a problem of the individual. From the medical model, a person with disability is in need of being fixed or cured. From this point of view, disability is a tragedy and people with disability are to be pitied. The medical model of disability is all about what a person cannot do and cannot be.
The social model sees ‘disability’ is the result of the interaction between people living with impairments and an environment filled with physical, attitudinal, communication and social barriers. It therefore carries the implication that the physical, attitudinal, communication and social environment must change to enable people living with impairments to participate in society on an equal basis with others.
A social model perspective does not deny the reality of impairment nor its impact on the individual. However, it does challenge the physical, attitudinal, communication and social environment to accommodate impairment as an expected incident of human diversity.”
Young people (indeed, all people), disabled or otherwise, are allowed to make their own choices. Whether or not others agree. As someone on Facebook said in a comment (to paraphrase): “Disability only becomes complex when support isn’t given”.
Michael and Taylor, for what it’s worth, you have my support. Thanks, to you and your parents, for being brave and sharing your story….it certainly seems to have got people talking!