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Wednesday, 21 November 2012

"Forever Child": When Disabled Voices Are Silent in the Media

Let me start this post about the "Forever Child" segment that aired on CBC's (Canadian Broadcasting Corporation) "The National" this week with a couple of caveats.

First, I'm aware that there's supposed to be a second part to the "Forever Child" series. I thought it was supposed to air this week on "The National", but I searched the CBC website and couldn't find it. If anyone knows when Part Two of "Forever Child" is airing, I'd really like to view it.

Second, I absolutely empathize with Denise and Murray Hastings, the parents profiled in "Forever Child". As I've written before, I used to work with youth with (sometimes quite severe) intellectual disabilities and their families. I know that there's very, very little out there in terms of support - I've had to be the one that tells the parents so, and it got to a point where it really did tear me apart, where I was asking myself at the end of every day, "What's the point in staying in this job? I can't help these families, because there's nothing out there for them." And I was actually fairly successful at working things out for the youth that I worked with, because I was very persistent and I worked with some very good, very dedicated people who were prepared to look outside the box for solutions and to move mountains if they had to in order to get good outcomes for the people they supported. They know who they are. I wouldn't have lasted nearly as long in that job as I did without them.  It's partly for the parents like the Hastings that I write this blog.  The people in charge of allocating funding for the disabilities sector need to know that families are in crisis.

But I write this blog for disabled people as well. And, frankly, I'm tired of reporting that doesn't give disabled people a voice.

I liked this video for the message that it got out about families in crisis. I did not care for the way Ryan Hastings was portrayed in "Forever Child", starting right from the title.

"Forever Child" is Disrespectful


Ryan Hastings is 29 years old. He is not a child. He is an adult, with an adult body, and adult rights.  He needs a high level of care and assistance with his activities of daily living, yes. But society has many senior citizens who are in the same boat, due to a number of conditions that affect their physical and/or cognitive functioning, and we do not refer to them as children. We recognize that they are adults.

People with intellectual disabilities are already stereotyped as being "eternal children". I understand why his parents call him their "forever child". I understand that using the phrase for the title was to emphasize that because the placements where Ryan Hastings can get the intensive care that he needs are so few  at the moment, he will always be a "child" to his parents in that they will always be providing a high level of care for him.

But, for media purposes, there has to have been a better, more respectful title for this piece than "Forever Child". The parents are not the only people in this story.

Ryan Hastings is Portrayed Disrespectfully in "Forever Child"


And for those that argue that I'm just playing semantics, consider how the video actually portrays Ryan Hastings like he's a child. Would you want these aspects of your life broadcast on national Canadian television and on the web if you were a 29-year-old male?

  • Footage of you without your clothes on as your parents dress you

  • Footage of your soiled adult Depends

Would you want to be standing next to your mother during an interview with her about the pressures of being your caregiver?

We don't know for sure how much Ryan hears and understands. He can't help that he needs support. Even if he doesn't understand a word of it...is it still really fair to him?

Has anyone ever considered that Ryan may sometimes, in his own way, feel the walls closing in on him, as Denise feels that they are on her? He has a vocabulary of ten words - he can only express his thoughts, feelings and desires to a very limited degree.  He and Denise seem constantly at battle over whether he can do what he wants to, when he wants to.  Denise doesn't mention that he has any other relationships besides the ones with her and Murray. His life is as small as theirs. He's as trapped as they are.

It's not Denise and Murray's fault. They're just doing the best they can.

But it's not fair to anyone in that family.

Not Blaming the Hastings



I'm sure that these things have occurred to Denise and Murray Hastings, and that it's all a part of their sorrow. I don't blame them for any of this. They're exhausted, and it sounds like they've lost hope, and it breaks my heart. I wish that I could work with them. I wish there was some way I could help.

No, I don't blame them. I blame a government that doesn't value the work of caregivers and the potential of disabled people enough to properly support either in making sure that disabled people can have full, meaningful days in their communities.

And I absolutely blame the CBC for being another Canadian media outlet that seems to think that this sort of blatantly one-sided reporting is acceptable when it comes to disabled people. We've seen it before, with Global Television's "16x9" segment about Annette Corriveau's fight to legally kill her severely disabled children. I don't like this idea that when there's a human interest story about issues surrounding intellectual disabilities, Canadian media thinks there's only one side of the story to tell, and that only the people that can communicate verbally deserve respect.

I actually debated whether I wanted to write this post, for the very reason that it draws attention to a video that I think was terribly unfair to Ryan Hastings. But I think some important points needed to be made, and I hope that my intentions in sharing and commenting on "Forever Child" are clear. You can view the first installment of "Forever Child" at http://www.cbc.ca/player/News/ID/2306284333/

I hope that the next part of "Forever Child" better meets the high journalistic standards that I've come to expect from the CBC.


9 comments:

  1. I am so glad that you wrote this post, Sarah, because our perception of the disabled as fully human needs to be emphasized over and over again. You are right, Ryan is an adult, my Adam is an adult nothing special but absolutely equal and valuable, on par with every other human. I have oft railed against the infantilization of the disabled. I cringe at words like "pillow angels", "victim souls". and now "forever child." Words like these, as you say, devalue the humanity of the other. And with that devaluation comes a denial of rights, a denial of personhood and a fundamental disrespect. It is good that you call our attention back to this issue which is not an issue of simple semantics, but stems from some very skewed beliefs about the severely disabled. This is an issue which needs to be repeated raised.

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  2. I totally disagree with the writer of this article. I am a mother of a developmentally disabled son who is 26 years old. There is absolutely nothing "disrespectful" about referring to Ryan and others like him as the "Forever Child". Ryan's own mother refers to him as such because the only adult attribute is his physical appearance. he is reliant on her like any child is on their mother. We can take ANY issue and go too far to the right or too far to the left. Of course, I am against discriminating against developmentally disabled people and I always advocate for my son and respect him totally as a human being and as my "forever child". Really, people should have more common sense in how we choose to pick our battles as not every cause is black or white. You're putting words in Ryan's mom's mouth. Forever child does not mean that she feels her son is invaluable or not equal as that is only the writer's opinion. Not once did she refer to her son in a manner that was disrespectful or discriminatory. We should refrain from making assumptions and looking at issues as black or white. That was a touching story that raises an important issue in advocating for our disabled children and in order to advocate for our special needs children we need to approach it with common sense and not be overly sensitive or we'll be doing this issue a disservice. The writer of this article missed the point of the show.This is not talking about equal rights or discrimination against adult children with developmental disabilities, that's a different show. This show raises the issue of the challenges of a caregiver who is aging, like myself. Let's not "politicize" a story that is do with love and compassion and the NEED for more support and services. Clearly, the writer missed the point of this story and chose to make a political statement when it was not warranted.

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  3. Hi Jewel


    I'm the writer of the article. Thanks for commenting.

    You have every right to disagree with me. I'm glad that you your piece about this, actually, because you obviously feel strongly about this (as I expect that would, being the mother of a disabled young adult), and because there are there are two sides to every story. You're telling the other side to this one, which is a side that I cannot tell, because when I worked in disability support services I got to go home at the end of the day. I can never (and I wouldn't want to disrespect you by pretending that I could) understand what it's like to be a caregiver to a disabled adult.



    It's interesting that urged me to stop making assumptions, and talked about the dangers of looking at issues as black and white. If you read some of my other writings, you'll see that I'm constantly saying the same thing about disabled people. To me, with all due respect to you, referring to *any* adult as a child implies a set of assumptions about their capabilities, rights, and potential roles in the world. It's a limiting way to look at an adult. It leads to black-and-white, stereotypical thinking like "Disabled people can't hold down jobs," or "Disabled people can't live independently," when there's ample evidence, especially when those things were said about people who moved out of institutions and moved into communities, that often these perceptions were wrong.

    Yes, I call it disrespectful when an adult is referred to as a child. But do I think that Ryan's mom doesn't love him, or want the best for him, or want him to be to be safe and to have a fulfilling life? Not for a second. And I can tell by the passion that's in your writing that you love your son, too. You are the families that I loved to work with when I was in social services, and it's by fighting to drive home the idea that your sons are adults that need increased supports and services to live fulfilling lives in the community as adults, not "forever children" who are constantly dependent on others and unable to have lives of their own that I fight for them. If that's political, I'm very sorry if that's offensive to you.

    That there are so many families out there looking after their disabled loved ones so diligently in the face of cuts to services and supports *is* touching. I just think that the CBC could have done better. I didn't mean this to be an attack on caregivers, and I'm sincerely sorry if it came across that way. These cuts in services, especially to aging caregivers, needs to stop - please believe me when I say that I'm on your side.


    Cheers,


    Sarah

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  4. I appreciate the objectivity in your response Sarah; I also appreciate that there are voices out there like yours who are speaking on issues that need to be better understood and respected. The only point that I want to make is that I don't agree with "slippery slope" arguments when a mother chooses to affectionately refer to her loving relationship with her developmentally challenged child as a "forever child." That is her personal preference as it is mine. There should be no fear that this would lead to the discrimination and further marginalizing of people with different disabilities. The story was from the perspective of a human relationship that many do not understand, and as such would hopefully educate others to the need that people like Mrs. Hastings and myself require support that is not readily available in this circumstance. I commend the CBC for drawing attention to this great need of aging parents who are in these trying and challenging situations. In my particular circumstance, which is very similar to Mrs. Hasting's situation, the reality is that my son IS 'completely' dependent on me just as a very young child is and does not have the faculties of an adult. He will never be able to hold down a job, to be independent or do anything else without assistance and as such he is a child and is lovingly forever my child. It is therefore, in my opinion, appropriate to use the term child in our circumstance without the unfounded fear that this will deteriorate their level of dignity, respect and value in our society or those with other disabilities. I believe that when we view a story such as this, we need to separate our "slippery slope" concerns as this was a human story that needed to be told and should be respected as such. Disability is a term that encompasses many different circumstances and we should not judge against this particular situation by imposing the broad definition of disability which is complex, given all the varying degrees of disabilities. Disability has many faces with their own complex issues in relation to discrimination. I believe that there needs to be an understanding that what may be offensive in one arena is not offensive in another arena as the circumstances or issues are not always the same. In this particular case, the term "forever child" should not be an issue as there is a far greater story here that needed to be told and understood by people. I am grateful to CBC for this story as an aging mother of a disabled child. I hope that those who viewed this program and have different disabilities to cope with are able to distinguish their personal circumstances from this and not judge this show based on an innocent term of endearment. Thank you for your much needed voice and I am always in support of those who have a social conscience and work selflessly to better the lives of others such as yourself.

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  5. I do take your point, Jewel. You've explained why you feel the way the way you do very clearly, and I appreciate that you took the time to do so. I've struggled with some of the issues that you've raised, at least on a theoretical level...I think a lot about language as I write this blog, and it's because of dialogue with people that I've met through it that I've made some changes to the way I speak about disability. So this sort of conversation is always appreciated.


    You're making me think on this one. I think that there are some aspects of this documentary with which I'm always going to be uncomfortable, but I think you may have a valid point that I made some assumptions about the Hastings family and the language that they choose to use. Thank you for the reminder that assumptions are never good in any context.


    If you live in Ontario, and you're comfortable and interested in doing so, send me your email address through the Contact page. I may be able to point you toward some planning resources for parents of disabled young adults.

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  6. Sarah, advocacy work is never easy. I am an advocate for another important issue that affects many Canadians,(not related to disabilities). It is easy for me to get caught up in the injustices that I see in my advocacy work. I am a passionate person as I know you are, and at times, our passion can override our ability to see the good in a situation because it's rarely there. Your last response shows me that you are the right person to advocate as you strive to maintain an open mind in discussions which requires courage. When we reach the point that we believe that there's nothing more to learn in our advocacy to others; that's when we're doing a disservice to those that need our voice. You have demonstrated to me that your passion does not override your ability to see beyond the injustices in order to best serve this community. It's always nice to have an open and frank discussion with someone like yourself who shares similar values to my own. Good luck to you in your advocacy work!

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  7. At first I was wondering if the title of the program was a comment/critique on the infantilizing of people with disabilities, but I guess that was wishful thinking on my part! I think "vulnerable adult" is a better term to use-it's pretty broad in scope but a lot more respectful. It's better to realize that being an adult can mean different things for different people.

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  8. Hi Mariah...I wondered about this as well as I began watching the documentary. I'd like to see the media take on that particular issue! Perhaps part of my shock at seeing what I did came from having that expectation.

    I really like what you've said here about how being an adult can mean different things for different people. I think it gets to the heart of what I saw as the issue, from the media perspective, much better than I did in my post. I come back and read the discussion that I had with Jewel fairly often...I feel like she helped me to understand something about the family's viewpoint that I didn't. But I still feel like there was a responsibility on the CBC's part to make sure that this man was given the respect that he's due as an adult in society, and I didn't see that in their filming and editing choices.

    Having thought about this post since I read it, I've realized that there's still some anger over how a dear friend with some severe disabilities was portrayed by a media outlet several years ago. I think that probably fed into how I perceived this documentary. Neither here nor there at this time, but...it's funny how things affect us.

    Thank you for your comment.

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