10 May 2011
Are you a disability masochist?
Before you continue, figure out how you can get 38 minutes and 46 seconds free. Then listen to this:
[audio:http://www.disableddaughter.com/npr_dis.mp3]If you really really don’t want to, you can read about it here.
And if you are a super wienie, here is the intro to it all …
A Father’s Quest To Help His Severely Disabled Son
When he was 8 months old, Walker Brown was diagnosed with cardiofaciocutaneous syndrome (CFC), a rare disorder that left him with severe cognitive, developmental and physical disabilities. By the time he was 3 years old, his father says, his medical chart was 10 pages long. …
Ok, now feel free to comment, all you disability masochists out there …
I just walked into the house after listening to the NPR interview on the way home. The first thing that came to mind was whether you had heard it, or read the book. I don’t have a severly disabled child so I can’t really have an opinion based on reality. I have always wondered about the so-called masochists, particularly the ones who insist their child is a “gift”. Is this some sort of defense mechanism or do they really feel that way? What I like about you is that you do seem to have as much of a life as possible within the confines of what must be done for Pearlsky. That strikes me as healthier.
I can’t wait to read the book and am not sure whether that makes me a disability masochist. I love good writing and if the nature of disability or in this instance, the experience of disability, is written of eloquently and with insight and beauty, then I’m all for it. Whether it’s about the “gift” or the “blessing,” of having a disabled child is irrelevant. What’s interesting to me is reading of another’s experience, hopefully in a way that sheds light on my own and, at best, the human issues.
Hello, friend. I have finally properly subscribed to your blog. Thanks for posting this interview. We sometimes forget how crazy our day-to-day is with our disabled kids, because it becomes our “normal.” But, yes, it is full-on CRAAAAAAAAAZY!! Anyway, I look forward to future posts.
I think some people really do see their child as a gift or a blessing, while others feel the opposite, with many living in the space between those two thoughts. Nothing is ever simple – I have seen my child as all of the above at one time or another.
The Disability Masochist label was a bit cruel, I thought. He shouldn’t presume to know why someone makes the choices they make when they are so different than his own.
I don’t have time to listen–got to feed, exercise and bathe my kid–but took a quick look at the NPR link. The ongoing difficulties of taking care of my daughter at home 24 hours a day have definitely beaten all the masochism out of me. And made me mean enough to fucking resent his definition. But then, he’s really only telling his own story, and I’m not in the disability-is-a-gift camp.
Gifts come to us in many forms. The assumption that a “gift” is something that comes from a five year old’s birthday party must give way to something more mature. Some people have had their homes burn down, only to discover a whole new life opens up to them after the event. Some people suffer experiences that bring them near to death and then, again, acquire a whole new perspective on life and living. We are a stubborn species, prone to self-indulgence and pettiness. We live in a culture that believes in entitlement. Our children who force us to do better, to dig deeper, to work harder, to think about the tough stuff, are indeed gifts to us and to the world around them, whether we have them at home with us or not, whether we like to admit or not. Yes indeed, it’s a pain in the ass to have to deal day after day, but I can tell you, I’d rather be the person that I am now than the one I was before. As for my daughter, she has her own reasons for being here and I will honour that until the day I die.
Claire, I have to tell you that I would give a lot to be the person I was before my son’s diagnoses. That is, the person who had true joie de vivre most days…who did not battle post traumatic stress disorder…who was not made fundamentally sad by her firstborn’s profound disabilities and her inability to change it. I want that joyful, peaceful woman back, and I work hard to get her back…but she’s gone. Sure, I have an insight and a maturity that few others ever have to develop…but it comes from pure trauma and daily grief. Meanwhile, I honor my son no less than you your daughter. He is a beautiful ray of light–and absolutely a gift to us–who touches many people’s lives. But what a terrible and ultimate price for him to pay to be a teacher. My only true consolation is the hope that he may have chosen this life (a la “Many Lives, Many Masters.”) I respect your idealism on this topic, but alas, this 42-year-old momma is a little more beaten down and lot more jaded about her darling sacrificial lamb.
MPC…my spouse shares both the PTSD and your sentiments precisely.
Hm… I thought a disability masochist was someone who reads the comment section after a disability-related article (especially in the NY Times). But seriously, I think this label of “disability masochist” and the underlying judgement is totally unnecessary. Dealing with the severe disability of one’s child comes with a lot of anguish and everybody copes differently. I think a parent can do much worse things than consider his or her disabled child a gift. I have a feeling that Mr. Brown wouldn’t love it if people criticized his decisions regarding his son- and his indignation would be appropriate. But then why pick on people with different sentiments and perspectives, why deem the account of their experiences “misery memoirs”? We all try to make sense of our experiences with disability and – depending on who we are, how we see the world, and what we believe in – we come to different conclusions.
Perhaps it’s too obvious to suggest it’s not the disaster but the reaction to it that may be a gift by bringing out qualities and perspectives that would not otherwise exist in our lives. Those who responded heroically in WW ll were forever changed, but it’s hard to imagine anyone casting the Holocaust as a gift. No deliberate maiming of a child, as beggars in some parts of the world probably still do to trigger sympathy and alms, could be seen as a good thing. Critical genetic or neurological damage randomly passed out by the universe holds no intrinsic merit to me. I’m not jaded about my child, I’m fiercely protective of her to a degree that I’m sure could be seen as masochistic. Not living in Canada, it has been necessary to support her many needs largely on my own and that has taken a very heavy toll. I agree with Claire about learning, and self-indulgence; I used to sense (more vividly than I do now) that my former self was in some ways a lightweight compared to those— like many of the commenters here, no doubt—who have had to develop a singular combination of warrior-spirit alongside a level of devotion which earlier in this journey frequently brought me to an amazingly high inner place. My daughter opened my heart to a kind of love that was so glowing and complete I often felt, as I spooned food into her sweet little mouth or worked endlessly to exercise and teach her, that we had entered a sacred circle of light. Distinctions need to be made between self-sacrifice and masochism, in a context of frank acknowledgement that extreme situations often require a very intense response.
I’m sure there are some perfectly lovely group homes. There are homes where the residents have not been left to the mercy of the administration whose job it is to maximise profit off the social security disability payments of the residents. Homes where the administration does not compete to get residents with chromosonal abnormalities or fantastically rare multiple diagnoses because their disability payments are larger than someone who is merely profoundly mentally retarded. I’m sure the homes that have parents checking-in regularly do their best to be models of compassionate care.
That said, I think Brown is a festering asshole for justifying sticking his son in a residential facility by calling everyone who chooses not to a “disability masochist.” I almost hope that one day he ends up in one of the bad homes. The homes where the residents are left in puddles of their own urine and pinched or slapped when they give the staff trouble. Where the food can only barely be called that and the staff can’t be bothered to do an adequate job of providing hygene care. I almost hope that, except that I wouldn’t even wish that kind of home on someone I hated. I hope Walker Brown never has to experience one.
I have read and re-read the disability masochist segment over and over again. I think the term is really inappropriate and quite insensitive, but, look what he says: “I think a disability masochist is somebody who made the decision to make their disabled child the most important thing in their life and the **only** important thing in their life. And they commit to that position and then when reality suggests there are other decisions, they get angry about it.” I don’t read there an insult to parents who choose to keep their kids at home and a justification for his having put his kid in a residence. I think he is talking about people who have rigid positions…for home or residence…for whatever reasons. Also, if there’s a slam there, it’s to people who forgo any life of their own to care for the child. Now…let’s face it, our kids absolutely define what we can and cannot do, and, for some there is only a minimal possibility for “a life”, especially if you have no help, minimal financing and/or you are single. But is the guy really wrong here? D’ya think I’m naive? Because, if we all had the money and the help, would we not take opportunities for respite for ourselves from time to time? Or maybe set up some sort of satisfying work, or whatever, AND care for the kid at the same time? I am genuinely asking. Is there not a difference between HAVING to make the kid the total focus of your life because you have no choice and CHOOSING to make the kid the single focus of your life, when other choices are available to you?
Wow, I am compelled to respond to Rachel’s comment. Please listen to the interview of Ian Brown and hear what he has to say because it is far from what Rachel is describing above. Why attack a father/journalist/author for sharing how he has tried so hard to know his son and to find value in his son’s life? Why attack a man who had to make such terribly difficult decisions about his severely disabled son that affected his wife and other child? These decisions and interactions were and are so profound to Ian Brown that he wrote honestly about the experiences.
To Claire’s remark: “Is there not a difference between HAVING to make the kid the total focus of your life because you have no choice and CHOOSING to make the kid the single focus of your life, when other choices are available to you?” I sure think there is, and know I sound like a broken record when I say once again that having the income to support round-the- clock, good care makes a huge difference to the quality of life a parent can have. Or provides occasional slices of relative normalcy, anyway—-of what would have been. But “having to” vs “choosing to” actually is a choice, though for many of us it is a Hobson’s choice, a Sophie’s choice. What I resent about the meme “disability masochist” is the slur. The added burden of the slur. It’s easy, of course, to understand people’s need to defend the course they take.
I agree…i think the guy is a bit harsh…and he should know better, unless he has never connected with any other parents, other than through their “misery memoirs”…another questionable expression.
@Kandee I was apalled by what I heard as his tone that people who choose not to use the assistance of care facilities are disability masochists.
I hope where he lives there are lovely facilities available.
In my community there are not good facilities. I myself worked in a bad group home. In my community these group homes are where the unattended go to die long, long, slow deaths. I saw other group homes that walked strings of kids on leashes, the sentiment was: at least they are getting walked. Where I worked there were staff who openly abused residents. They were reported to administration and to licensing, but it was in the administration’s best intrest to cover it up and they were good at it, from long practice. The residents had no rights, no dignity, at best they were treated like pets, at worst like vermin.
Any blanket statements about group homes being a valuable resource are naive at best. I think people who deride others for not availing themselves of group homes are assholes.
If you live in an area with great programs and facilities and other assistance and you never avail yourself of any of it, then that is probably foolish and not benefiting anyone. But after what I saw in the home where I worked, I completely, fully understand anyone who would rather beat themselves every day into the wall of their loved one’s disability than trust that the available caregivers would provide care with respect and compassion.
I did not hear anything of his tone that implied he looks down on those who make different decisions than his own although his language was often flippant and I’d say more defensive than insulting. I have to say that perhaps those things that we are most afraid of about ourselves are those things that we most object to — in other words, is there perhaps in this discussion a bit of “methinks thou dost protest too much?” When people ask me whether I’d consider putting my daughter into a home, I usually say I consider it as likely as putting one of my sons into a home and either way a part of my soul/heart would be killed. I can’t imagine that this decision is every taken lightly except by those of the most callow natures. To me, Brown seemed a bit tortured, as we all are to a certain degree, and maybe his edge was a bit sharper than others, but I found the interview moving and look forward to reading the book. The only times I winced during the discussion was because of the often incredulous tone of Terri Gross — I found myself wanting to scream “This is the way it is for many of us!”
Perhaps one reason actually listening to the interview was not a priority for me is that, much as I often enjoy Terry’s work, this is one area I wouldn’t expect her to find her way into so well….
There is a big web feature about this on The Globe and the Mail’s website. I think that Ian Brown presents his story better in writing than in the interview, which I found interesting but also unsatisfying. I wish Brown’s logic were more clear. His thoughts seem better expressed in his poetic prose. In any case, I appreciate anyone sharing so much of themselves like this. I’m looking at his judgements (misery memoir etc) as part of his story.
http://v1.theglobeandmail.com/v5/content/features/focus/boyinthemoon/
The link Christy provided has certainly changed my first impression of the tone of this work.
Just read Brown’s story from Christy’s link. (Thank you for posting, Christy.) It is indeed superior to the interview, if only because Brown is a gifted writer and is much better able to get his ideas across that way (and doesn’t have the time constraints of radio interviews to contend with). It’s important to say that it details his years of agony (before, during, and after) about sending his son away. We should all be very careful not to judge any parent having to make this wretched decision.
As for the masochist label, it is almost too loaded a phrase for most people to be able to objectively comment on. And speaking from personal experience–although I am decidedly not a DM–it’s sort of attacking someone who is in so much pain they can hardly go on. What’s constructive about that?