I am excited to see that sociologist Linda Blum has come out with a new book, Raising Generation Rx: Mothering Kids with Invisible Disabilities in an Age of Inequality. Here’s a post from the archive highlighting some of her important and powerful findings.
In an article titled Mother-Blame in the Prozac Nation, sociologist Linda Blum describes the lives of women with disabled children. While mothers are held to an essentially impossibly high standard of motherhood in the contemporary U.S. and elsewhere, mothers of disabled children find themselves even more overwhelmed.
The daily care of their child is often more intensive but, in addition to that added responsibility, mothers were actively involved in getting their children needed services and resources. The need for mothers to be proactive about this was exacerbated by the fact that they had to negotiate different social institutions, each with an interest in claiming certain service spheres, but also limited budgets. “While each system claims authoritative expertise,” Blum writes, “either system can reject responsibility, paradoxically, when costs are at issue.” Because they often had to argue with service providers and find ways to beat a system that often tried to keep them at bay, they had to become experts in their child’s disability, of course, but also public policy, learning styles, the medical system, psychology/psychiatry, pharmaceutics, manipulation of jargon and law, and more.
Mothers often felt that they were their child’s only advocate, with his or her health and future dependent on making just one more phone call, getting one more meeting with an expert, or trying one more school. Accordingly, they were simultaneously exhausted and filled with guilt. I wondered, when I came across this Post Secret confession, if this mother was experiencing some of the same things:
Originally posted in 2012.
Lisa Wade, PhD is an Associate Professor at Tulane University. She is the author of American Hookup, a book about college sexual culture; a textbook about gender; and a forthcoming introductory text: Terrible Magnificent Sociology. You can follow her on Twitter and Instagram.
Comments 85
Michelle — July 2, 2012
My experience: Some health care professionals believe themselves to be the expert in the room when because of your specialized experience, you know more about this one particular area than they do. The doctors who respect the family's store of knowledge on the subject and add their expertise to the pile are greatly appreciated. Those who disregard the family and most importantly don't try to (or can't) explain why they're doing what they're doing are a source of unending frustration.
MSoB — July 2, 2012
Our public healthcare system and related family and community services remain woefully unsupported and difficult to negotiate, and desperately need fixing. That said--and I hesitate to even bring it up here--does anyone ever marvel about how we are the only species on earth that's pretty much exempted from the laws of survival of the fittest? Before anyone screams that I'm an evil eugenics proponent, re-read that Post Secret confession, and please don't claim that there are any easy answers here. There are millions of people--disproportionately women--whose lives are made living hell by the constant stress of caregiving (I recall seeing scientific studies showing that caregivers actually age faster). It's extraordinary to me that we as a society care more about the death of a being who is, for all practical purposes, a vegetable than we do for the life of the martyr who is the caregiver. I don't pretend to have any answers about how we'd design a system to address this quality-over-quantity of life issue, but I think it's high time we as a society broached this difficult subject.
G.Janitor — July 2, 2012
I love these little reminders of how my existence is a burden and how I should just die to make my loved ones' lives easier. Thanks for that.
Erational — July 2, 2012
I've been experiencing a version of this for years now, with the added burden that, because I'm a roommate rather than a parent, I have no legal/official standing in trying to secure help for my friend, who is unable to care for himself and yet has no guardian. Also, the resources for adults with developmental and mental health conditions, especially those without elaborate (and often expensive) diagnostic testing in their medical histories, are so terribly limited. The health-care system for people with autism and the like is built around the idea of the responsibilized neo-liberal subject; if you are not in a position to advocate for yourself (or have someone officially recognized as an advocate for you), you almost certainly fall between the cracks. I can't parent my friend in the intensive way he requires, but also can't leave him to the otherwise-inevitable life of homelessness or suicide.
neuroradical — July 2, 2012
Wow, I have been reading this site for years and, while I've occasionally disagreed with something, I've never been so grossed out. No offense to the likely well intentioned original poster, but this feels like extremely shallow analysis at best or a neurotypicalist apology for the murder of children at worst.
Children with disabilities ARE often murdered by their parents around the world, and whenever it happens in the US, the media response is to talk about how difficult it is to parent a child with a developmental disability in ways that smack of justifying the murder itself while denying the victim even the basic acknowledgement of tragedy that we generally bestow on murder victims. The sadness and the pity in these cases is all too often reserved solely for the murderers who we are told over and over again that we should sympathize with because it must be so incredibly horrible to have a family member who has autism or cerebral palsy or down syndrome that it drives decent people into homicidal frenzies. Besides, journalists imply, the victim had no real future or value anyways so the real tragedy here is that an actual human being was forced to slaughter their family member(s) and now that productive member of society might have to go to jail. The fact that parents and caregivers of children with special needs face overwhelming difficulties and a lack of resources and community supports is no big news, it's actually pretty much all we talk about. Meanwhile people with developmental disabilities, both children and adults, suffer an epidemic of neglect and abuse that frequently only gets worse as they get older. I have some personal knowledge of this; I am at the relative beginning of a career serving people with disabilities and have seen some pretty horrific things already. Individuals who are fortunate enough not to be killed outright as children experience abandonment, sexual abuse, financial exploitation, physical abuse, emotional abuse, starvation, neglect of medical needs, confinement, restraint, improper use of medication and a general lack of access to safety and hygiene. Hell, a lack of access to the world around them at all. People with developmental disabilities often live in a state of constant, unintentional intrusion on a hostile world.
What about the strong and amazing people who face these challenges on a daily basis and still manage to, you know, not strangle their children? Why don't we talk about them? I know quite a few neurotypical people who deal with their loved ones with dignity and humanity every single day, despite the lack of resources, despite the fact that they and their family members are explicitly not welcome in society and despite the fact that articles like this one seem to suggest that it's alright just to murder the human beings who rely on them for love and shelter and community. They get little to no sympathy or cute postcards and write ups on blogs.
Yes services are pathetically inadequate, but the argument for expanding them is not that people with disabilities are a burden on able bodied, neurotypical people. The argument for expanding services and treating other human beings humanely is that individuals with special needs are full, worthwhile and frankly wonderful human beings deserving of love and support and an opportunity to seek happiness in their lives, even when that is inconvenient for the rest of us.
RIP George Hodgins
RIP Tracy Latimer
RIP Tia McShane
RIP Regina Wynn
RIP David Skelly
RIP Gerren Isgrigg
RIP Payton Ettinger
RIP the literally millions and millions of people left to die on mountain tops, killed in concentration camps, killed in "schools" like Willowbrook, most of all, RIP to all of the wonderful children and adults murdered by their loved ones for being a "burden", someday we will all realize that your deaths will never be justified.
Julie — July 2, 2012
It's a sad truth that today's women are sold and buy the fairy tale idea about what motherhood is. "Kodak life" I call it. People don't entertain the possibility that one might find parenthood to be more burdensome than it is rewarding, or that they will have to watch their children suffer and die, or that they might just not enjoy having children anyway, or that parents might find they don't enjoy parenthood and will yearn for their former lives. We exaggerate motherhood far too much in theis society, and mothers pay the price for it.
And when any mother makes such a comment on it, she's regarded as if she's the devil.
Thornacious — July 3, 2012
There's so much about this article that is worth talking about. But surely it must be possible to talk about this subject without HAVING to bring up the notion of a "possible solution" being the death of the disabled person. Honestly, it would be like writing an article about managing colicky babies, and adding in that SOME parents shake their babies to death, and we don't want to do that, but y'know, it DOES happen.... (with the unspoken message that, "and we certainly can understand when it does.")I have twin boys who are both autistic. When they were toddlers, and I did not yet know that I was dealing with children on the spectrum, but rather thought that their various difficulties and behaviors were proof of my "failures" as a mother, I went through a terrible depression (post-partum depression + feeling like a bad mother + isolation = Depression Voltron). And I remember a couple dear friends of mine, trying to be helpful, suggested they could "take the kids off my hands for a few days" so I could get a break.It was like a physical blow, and it took me a couple days to realize that my friends did not intend it as the betrayal it felt like. I absolutely did not want my children to /not/ be around - I just wanted everything else to be easier, so I could actually ENJOY them more, and not feel so overwhelmed.
This is what we need to be doing for families (and, as Erational mentions, non-family support people) of people with disabilities. They don't need relief from the disabled PEOPLE in their lives. They need relief from arguing with insurance companies and filling out endless paperwork. They need relief from some household tasks, if the PWD in their lives can't help with them. They need relief from whatever disability-specific tasks (special meals, extra laundry, maintenance of assistive devices, etc.) may be required. They need relief from stress and isolation and worry and guilt.
When we deny caregivers and families this kind of support, we are depriving them of opportunities to connect with the disabled people in their lives. We make it nearly impossible for them to build reciprocal, loving relationships, which would in themselves BE a relief.
Certainly one of the greatest forms of relief I get, in supporting my sons, are those times when we can just do something FUN together. It doesn't have to be huge, sometimes it's just reading a book together or squishing PlayDoh around. Having those times to connect makes the hard times bearable, makes it easier to remember that yes, right now might be Very Bad Indeed, but it won't last forever.
Laura Ellis — July 3, 2012
Why is this post assuming the sender of that postcard was a mother, not a father?
Mouse — December 26, 2012
So, why is it that with race we say that the point of view of PoC are the most valid ones, and with gender that women's viewpoint is more worthwhile than men's, but when it comes to disabilities we always talk about the people who care for them, not the people with disabilities themselves? THEY are the ones we should be thinking about. The fact of the matter is that this post is full of the idea that parents of disabled children should be hailed as angels because they didn't abandon them. I know it's a hard life, but it's also called not being an awful human being. The problem lies in the fact that we expect these children to be burdens, and their parents must be so selfless to take care of them. We need to listen to disabled people in the same way we listen to blacks or women, because THEIR point of view is more important than any able-bodied person, even and perhaps especially their caregivers.
BPeterson — December 27, 2012
There should be a 10 days grace period for after birth abortion. Especially considering most "premature births" are actually failed miscarriages.