Adam Cooper
Dr. Foss
Disability Lit
26 April 2020
A Different Approach at Parenting
Jim Sinclair’s Don’t Mourn For Us outlines the perception a new parent may have upon finding out their child is autistic. In three sections it highlights the struggles parents may have with understanding the disability and how it affects the relationship they’ll have with their child. I found this to be my favorite piece in the autism unit mainly because it seems like it would be impactful to a large demographic of people. In some cases the way a child’s disability, in this case autism, is handled can actually make the effects of the disability much worse than they would be otherwise for both the parent and the child. To be a good parent to a child with a disability it is essential to not allow any grief you feel to ruin the relationship with the child, understand in certain cases it is not a curable ailment, and to learn to listen. As Sinclair explains this may mean no matter what you do the relationship will not be the normal one you had imagined but that’s not to say it won’t be a beautiful relationship regardless. This piece does a wonderful job of outlining the negative effects a parent can unintentionally have on a child with any disability, not just autism and can be related to other disabilities we’ve studied throughout the semester. In order to properly care for someone with a disability it is essential to not try to divide the disability from the person but rather to adjust the style of care given to them to better accommodate them. The big issue is trying to make the child fit into a mold the parent has created instead of changing the parenting style to fit the child. The issue becomes more about the parent and child and in trying to comfort themselves a parent may do harm to their child they are unaware of.
Sinclair recognizes that grief, in the case of a parent learning their child will have a disability such as autism, can be traumatic. But the issue comes when the trauma the parent experiences overshadows the disability itself. Caring for those with disabilities requires the caretaker to devote their time to the disabled person, not to dealing with their own feelings about disability. A distant example we see of something like this is from early in the semester when we read Mary Shelley’s Frankenstein. If we compare Victor to the parent and The Creation to the child it becomes a pretty clear example. Victor wanted a beautiful being and had imagined that whole heartedly. When The Creation was not what he had imagined he went into a state of grief completely neglecting the creation and letting it slip further away from him without care. The Creation genuinely just wanted to be loved and cared for but Victors own grief prevented that. Obviously I’m not insinuating that those with autism or other disabilities are “creatures” or “monster-like” but the parent-child relationship is present here along with the neglect that can be found alongside a grieving parent.
The first section titled Autism is not an appendage discusses the idea a parent may have that there’s another child within the “shell” of autism. A child that can fulfill all the dreams the parent had for them. This is problematic as attempting to uncover a person within will amount to nothing. I think a large misperception of all disabilities is that there’s a normal person within the disability who’s been caught by it. So instead of starting to understand who that person is with the disability we make their lives harder by trying to break them out of a mold we’ve imagined them being in. Take for example someone born with only one leg, you wouldn’t try to cure this as it’s clearly visible there is no “cure” and a real leg will never grow there. So you change the style of care you had envisioned giving the child. According to Sinclair, this problem is present in the relationship between parent and child when navigating autism. Sinclair says “It is not possible to separate the autism from the person–and if it were possible, the person you’d have left would not be the same person you started with.” (Sinclair) This is a clear example of how parents attempting to “free” their child from autism would create a rift in the relationship. Spending all the energy you have attempting to create a new child as opposed to parenting the one you have will never lead to a new child, rather one who is neglected and may suffer from the side effects from autism worse than they would have otherwise.
Communication is huge in any relationship, especially between a child and parent. However for someone with autism, communication can be extremely difficult. This means it’s the parent’s job to accommodate this and in turn help nurture a relationship and do their part in helping their child be the best they can be. A huge part of what we can do to help anyone with a disability is to merely listen. Far too often those with disabilities are drowned out by the hustle of everyday life and it leaves them without the assistance they need. Even in everyday life it’s easy for us to not hear what someone with any disability is saying. We go about our day to day lives not considering things from their point of view, not out of intentional rudeness but due to lack of education. For someone with autism they may not be able to flatout say what they feel in a way that a parent can hear and understand without education and changing the way they parent. Sinclar says “Each of us who does learn to talk to you, each of us who manages to function at all in your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien beings.” (Sinclair) I think the same may apply to any individual struggling with any disability. To talk and not be heard is without a doubt extremely discouraging. Functioning in a society built for those without disability is hard enough, not being heard makes it harder.
Sinclair’s work goes a long way in humanizing those with disabilities, especially autism. Far too often we see children and adults alike who have disabilities as missing something. And in some cases this makes us grieve for them rather than care for them. In a parent child relationship this can have even more significant effects. Near the end of his passage Sinclair says “The tragedy is not that we’re here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?” (Sinclair) This speaks not only about a parent and child struggling to build a relationship around a disability but also about everyone who lives around us with any disability in a world built for everyone else. There is no easy path for any parent and I’m sure I can’t comprehend what parenting is like but I think Sinclair’s work helps start to paint a more clear picture of what a parent can do to help their child and what we can do to help those around us.
Words: 1,230
I pledge – AMC
Sinclair, Jim. “Don’t Mourn For Us” Autism Network International newsletter, Our Voice, Volume 1, Number 3, 1993.
