Power and Responsibility

An earlier version of this post was published in July, 2009.

When I mention that Don has a homecare worker, and explain what that job is, I often get this question:

“Why don’t you do all that stuff for him?”

This touches on something that I’ve referred to a few times, and that’s the idea that it’s totally okay (admirable, even!) that services for people with disabilities be offered by volunteers. It gets into a lot of complicated stuff.

For example, Don’s homecare worker does things like makes sure he is clean-shaven once a week, washes his hair carefully, and does some of the stuff he needs done for his back, which suffers from a lot of sitting/lying related issues, like heat rashes and sores. She’s there for about an hour or so.

What she does for Don is a huge deal in terms of his personal hygiene. All those little things that allow him to be “acceptable” to our neighbours take energy, such as having clean hair and a neatly trimmed beard. Before homecare, Don would often go weeks, if not months, without a proper shave, and look very scruffy and unkempt. But it would be a decision for him – does he shave today, or does he make a meal? There wasn’t enough energy or concentration to do both.

The question of why I don’t do these things has a few assumptions under it. First, it implies that, because I’m his spouse, I should be in the caretaker role. I should be making sure all his personal hygiene needs are taken care of. There’s a power imbalance there that makes me uncomfortable. It puts me in role as adult, and Don in role of child, and this is just not acceptable.

The other thing is part of why this volunteer thing bothers me. Don’s personal level of comfort should not depend on my energy levels. It shouldn’t depend on my mood. It shouldn’t depend on whether or not I’m angry at him today, or I’m too busy, or if I’m home.

Right now, it depends on whether the woman who is paid to come to our home and do these things shows up. If she calls in sick, there is someone else who will come in. I know she has a degree in nursing, focusing on homecare for people with disabilities. I know she’s a professional, who has been taught the issues around disability and privacy, around personal autonomy, and around sexuality and disability. I know the process we will go through if either she or Don does something sexually inappropriate. I know the appeals process if she threatens him or he threatens her. I know what will happen to Don’s care in those situations. More importantly, Don knows what will happen in those situations. He has personal autonomy.

Don’s health needs shouldn’t be dependent on me in any way, because that’s not safe for Don.

In my experience, Feminism tends to have discussions about caregiving focusing around the fact that caregiving roles fall predominately on women, and lead to things like “the second shift”, or caregiver fatigue, or even directly impact women’s abilities in the workplace. (“I can’t work late because I need to get home now.”) I think this is an important thing to discuss, but I don’t think it’s the only part of the caregiving equation. I think we, as feminists, need to also talk about the power inbalance that comes in when one is a caregiver for a spouse or parent that has a disability.

As well, we rarely talk about what happens when the role of caregiver falls on women with disabilities? What happens to that allotment of spoons then? What view do we have of women with disabilities if their children aren’t “properly” cared for? If some other loved one isn’t getting everything they need? What happens to the caregiver/second shift issues then?

I think feminist discussions about caregiving and responsibility need to broaden out to include these complicated issues.

35 Comments

  1. There seems to be a whole lot of pushback to the notion that professional care is better than the care from a relative/spouse. I was surprised to find myself at the receiving end of this pushback when my grandmother and I made the decision to move my great-grandmother, at 101, out of my grandmother’s home and into a nursing facility. I was 18 at the time, and working full time and living on my own. I helped when I could, but my schedule was erratic, to I really couldn’t commit to being available for every appointment, shower, etc. My grandmother was 75 and had emphysema and osteoporosis. She physically could not help get her mom from the chair to the toilet, etc. It was dangerous for both of them. Homecare would have needed to be extensive, and was neither practical in their case nor welcome. Just not their thing.

    Indignant acquaintances called me everything but a child of God because I didn’t quit my job and move in to their tiny 2 bed duplex to take care of them. Here’s the thing – my grandmothers would have set their own hair on fire before asking me to do so. They didn’t want me to. But folks believed I was to override their decisions and insert myself in their home.

    And these same folks wondered aloud why the staff at the facility could do a better job than we could. Because there are dozens of them. Because if one is ill, another takes his/her place. Because they are trained. Because they work on shifts, and get a night’s sleep before working again. Love and familial ties do not a home healthcare worker make.

    It was so nice to get to visit with my great-grandma again. Grandma and I were no longer “in charge.” We hadn’t realized it at the time, but instead of our usual family dynamic, she had become our ward. That power dynamic had taken a mental and emotional toll on us all as surely as the work took a physical toll. But no one want to hear these things.

    I think the arrangement that you and Don have with the home healthcare worker is fantastic. I have mentioned to my husband that if I find myself requiring constant assistance with daily self-care tasks that I want his help in finding a service provider. He knew my family’s story, but the power-dynamic issue didn’t come up directly. I think a mention of that would ease what remaining discomfort he has about hired help for me.

  2. Great post. Also, how does having a disability impact how a woman with a disability is viewed as a potential care-giver at all. I really recommend checking out Lexi’s blog at beyondacquara.wordpress.com.

  3. Thank you for this. I really needed it right now….I might come into chatterday thread and rant there later on, but for now let’s say it is really relevant to my life right now.

    I have another question: How would society view a person with a disability taking care of another disability? Would the viewpoints change if one person had a physical disability and the other one a mental disability?

    Okay, that was two questions 😉

  4. Thanks for this insight – I hadn’t thought of it in quite that way before, but you’re absolutely right.

    I think we, as feminists, need to also talk about the power inbalance that comes in when one is a caregiver for a spouse or parent that has a disability.

    I would add ‘adult offspring’ to that list, because having been in that position, that’s where the power imbalance is strongest. Unless the parent is very enlightened and conscientious, the child may never actually get to grow up.

  5. Ack, I didn’t even think of that situation, Dogged. I tend to be really out of touch on parenting issues at all. Thank you for bringing it up.

  6. Yes, this. And I think it’s deeply wrong that home care or other professional care alternatives are not available to many people who need and would want them because of money. If people can and want to take care of their relatives at home, that’s great, but I do believe that professional care is often physically and mentally better for everyone involved.

  7. If people can and want to take care of their relatives at home, that’s great, …

    Mel, I would add to that “that’s great, if it’s what everyone involved really wants, and can really do.”

  8. This was starkly brought home for me before my mom, who has Parkinson’s, had 24/7 home care. My stepfather, who at the time was her primary caregiver, needed surgery, and I ended up taking time off school and postponing my qualifying exam to go help them both. It was incredibly stressful for me — but more importantly, I couldn’t do it right. I have no nursing training. I am not strong enough to lift my mother if she falls. The process of getting my mom in and out of the bathroom, between her difficulty walking and her dementia (which made her frequently forget what we were doing), sometimes took forty-five minutes to an hour. After a few days of this intense caregiving, compounded with the stress of the surgery and my continuous sadness about my mom’s declining health, I was profoundly depressed and angry. And that was a temporary situation! Now that my mother has full-time, well-trained aides, her quality of life is better, and so is my stepfather’s and so is mine. People who ask spouses, children, and parents why they don’t just “do all that themselves” often have no concept of how much work is involved and how intimate it can be for both the PWD and the caregiver.
    .-= Sweet Machine´s last blog ..Some applicants are more equal than others =-.

  9. In the Netherlands, the care system dictates that people be entitled to less care if they live with someone. It goes so far that, if a parent with disabilities needs certain kinds of help, it is assumed that their children can take over (housekeeping duties for example). I am not sure how this works if you need support for mental health reasons like I do, but it is quite likely that if I live with my boyfriend, he will be assumed to take oever my practical help.

    As a side note, I get wondering how this issue of partner carers intersects with the reversal of traditional roles that might occur for women with disabilities who receive care from male partners?
    .-= Astrid´s last blog ..What We Say Isn’t Always What We Mean =-.

  10. Astrid – that role-reversal is happening in my house. My husband never really learned the finer points of domesticity – not so much because of gender roles, but because he was an athlete and rarely home. I rather like some of the traditional “women’s work” – I find cleaning to be rather satisfying, but I’m teaching him how to do many of these things because I can’t handle all the tasks that I would like to. He wonders aloud about why many guys don’t like the work, because he finds it satisfying as well. He now believes that knowing these things is essential to being self-sufficient, regardless of gender. I’m very grateful that he isn’t having any gender role discomfort about our situation. But it is telling that it is hard to find dish gloves large enough for a big man and also aprons. Because men don’t do dishes and don’t cook. Gah.

  11. Yes, this! I am perpetually caught feeling like I’m not being a good enough parent because I have to take care of my own health first (for if I don’t, who will take care of my child?).

    I sometimes wonder if parents with disabilities get criticized for their children’s smallest infractions because people are expecting us to fail.
    .-= Heather Freeman´s last blog ..My brain is creepy =-.

  12. When my chronic issue acts up – or even now, with the kidney stone – I don’t need care.

    Most of my care when the pain was bad was basically making sure I did not move. So I didn’t have to do the dishes.

    But right now, with the kidney stone on top of the “normal” ::sigh:: pain, the role of caregiver is much more than what you physically do.

    My reactions to extreme pain have been as varied as ::sigh::/scream, sick to my stomach, actually going through with the upset stomach, dizziness, and “Dammit, my vision’s wonky again.”

    So my poor, underpaid mom has to decided whether to miss work or be on the other side of the county. (I used up all her sick days long long ago.) She has to decide whether to take care of her needs – can I take my prescribed sleeping meds? Can I take my pain meds? (Her feet…) Hell, can I have a drink? What if Kaitlyn has to go to the ER?

    Being at home has helped her a lot – even though we’re still apart while she’s at work, I’m asleep during those hours. She doesn’t have to spend the evenings worrying and wondering.
    .-= Kaitlyn´s last blog ..Living at home does not make you a bum, Judge Judy. =-.

  13. Heather – I don’t know. Sometimes I think my daughter gets a pass on some things when teachers know about my health. It’s well-intentioned, but I just want to jump up and down and yell “No! Her life *is* normal, at least for her! She doesn’t think it’s harder or different, so don’t excuse things you otherwise wouldn’t!”

  14. My relationship has come close to ending over the care issue once already. I don’t get services because of living with a partner (also in the Netherlands), and we also don’t make enough money to pay for it ourselves. Besides my partner’s stress getting way too high (he wouldn’t be very well suited for it even if it was his work, for a set couple of hours a day, and here he is expected to do this 24/7 on top of his own more than full time job) and more fights because of that, what really bothered me is how it changes our relationship:

    There are things I’d like to do that he has no interest in. Normally, I’d just go do them on my own, but I can’t. I need someone to go with me and/or help. Doing things with me starts to feel like work for him, even the things we both enjoy, because he has to do stuff with me too often. We need to do some things on our own too.
    Also, I start feeling like I can’t do anything wrong or get really angry at him, because he might not do some stuff that I need then. It’s just wrong (and I know he doesn’t like this either, but it does happen every now and then), and I don’t mean to say this is his fault; he isn’t as professional I can replace or talk to their boss, and he’s actually already much better at this than anyone else I can think of who doesn’t get paid for this and go home at the end of the day, but he’s no saint, nor should he have to be.

    That’s two examples, there is more to it but I have difficulty building words around it, so I hope this is enough for people to add the rest on their own.
    .-= Norah´s last blog ..I’m the world’s most irregular blogger! =-.

  15. This is a brilliant post. 🙂

    I do not have a lot of experience with this, but I did run into some of the difficulties that having someone close to you volunteer to help you with things can cause.

    I often have a lot of trouble making it to things and wind up missing a lot of classes. Last year, a close friend offered to come by my house to check up on me and see if I was doing okay if I didn’t make it to lectures one day. I wasn’t sure about it, because my house was quite far from the department, but he insisted that it wasn’t a problem and that it wasn’t any kind of imposition because he’d be worried about me anyway and want to know that I was okay.

    So we tried it, and it… didn’t work. And part of the *reason* it didn’t work was actually /because/ he was my friend, because I couldn’t help but think it was this huge imposition and felt incredibly guilty every time he showed up at my door, and that made me feel worse and that made my problems worse… and /then/ I had a huge amount of difficulty *telling* him that it wasn’t working, because I felt as if I was being ungrateful and he was putting in this huge amount of effort for me and…!

    Which is to say… sometimes the close relationship means that the help is less effective or that the disabled person winds up feeling as if they can’t criticise the form in which help is offered even if it’s actually making things worse.
    .-= Kaz´s last blog ..Because incurable speech disorders just up and vanish all the time, don’t you know =-.

  16. Norah, you articulate the problem so well. I commented on another post that this is the reason I don’t want to live with my boyfriend until/unless I can deal with so little support that it will not likely be a problem or I can convince the CIZ (Dutch agency that determines who gets services) to give me services anyway because my boyfriend can’t support me. I think howeve rin that case it’d need to be backed up with documentation that will violates his privacy. And it’s out of the question for me to have him deal with all my mental, behavioral and practical support needs. That would ruin our relaitonship, and a partner-caregiver doesn’t have a duty to find either a new partner or a new caregiver, while a professional caregiver discharging you has a duty to find you a new one. As a side note, since my boyfriend lives in Germany, I couldn’t live with him there unless I had a job, since I’d lose my benefits and I don’t want to be financially dependent either. But that is less of a problem since he could move back here.
    .-= Astrid´s last blog ..College Experiences for Students with Mental Illness =-.

  17. After the kidney stone was found and I was prescribed a stronger pain medication – if you’re going to put me in such a fog that I can’t think creatively or even say the word, can you at least take away ALL of the pain?

    Anyway, I have a roommate.

    This all went down last week, culminating with the prescription and discovery (of my child I need to deliver, according to my mom. it’s name will be Kensington. I hate it.) on Friday. I’d been trying to get a hold of my RA all week, stuck a note under her door, nada.

    So on Friday I told my roommate I was on this new medication and to just keep an eye out. She hates that I snore, so I told her if I’m not snoring, that’s when there’s a problem! (I wasn’t sure what the meds would do – I wanted non-drugged eyes* on me.)

    Se left Saturday morning and wasn’t back in the dorm when I left Monday afternoon. I’m sure it’s just a coincidence, but it makes me laugh.

    *I just remembered something that my mom does that is part of care taking. She usually goes to my appointments with Dr. Ego with me, though a few times she hasn’t, because I won’t “look at him.” (Because he’s an arrogant ass!) But having her there is the best thing for me, considering all the medications he prescribes, and the mental state I am occasionally in. He has claimed that we talked about things we never talked about, or that he did procedures he never did. (Overbooked.) If I were to contest these things, I would be doubted (my memory is spotty a lot). But my mom – she’s not on any medications like mine! She’ll be believed. Plus it helps to have someone in there to look at and go, “Did he just say that?”
    .-= Kaitlyn´s last blog ..Living at home does not make you a bum, Judge Judy. =-.

  18. This is a really good post and comment discussion.

    As I’ve watched my own abilities decrease over the years, I often wonder and worry about if/when I hit certain points of not being able to do things for myself such as dress or bathe myself. And I know absolutely that I would not want someone who is close to me (family member, friend, partner, etc.) to do those things for me even if they were willing and able to. I have to hope that if I do hit that point, I will be eligible for affordable in-home care.

    When my mom’s mom was at the point of needing in-home care, I know my mom felt a lot of guilt about not being able to do it herself, as my grandma would have preferred. Eventually, my mom did move in with her and took over some things, but she insisted for her own personal boundaries that some things continue to be done by the care givers who were already coming in regularly to help. And when grandma started needing more constant care and my mom was needing to move away again, she worked on finding good nursing care for her – which was also not what my grandma wanted. And while I felt bad for my grandma, who wanted to stay in her home and wanted her family to be the ones to care for her, I was proud of my mom for being clear about her own boundaries on the issue. It’s really hard when loved one’s needs differ from one another, though.
    .-= Rosemary´s last blog ..2009 Fall TV =-.

  19. I think this post underscores a way in which traditional “women’s work” is totally undervalued in this society. Caregiving professionals (most of whom are women) are assumed to have no special skills or training and that anyone can do their job. In fact, we are talking about trained professionals engaging in professional work. If someone needed an accountant or a dentist no one would assume that their spouse should just step up and do their taxes and clean their teeth

  20. I come from a family where nursing was pretty much the “traditional” job for the female members of the family (my mother, both grandmothers, and two out of three of my aunts were nurses, as were two of my cousins). I was unusual in my family because I was both female and very firm about not becoming a nurse – I’m lousy around sick people, I’m far too selfish for the job, and I really don’t want to be fetching and carrying for other people all the time. Thankfully, my parents have accepted this, and I’ve been telling both of them since before I left home I would not be looking after them if they became incapable of caring for themselves – instead, I’d be looking around for old folks homes. I’m still not looking forward to the day when this eventually becomes necessary, because I’m sure I’m going to come in for a lot of social shunning for being so “selfish” or “uncaring” as to put my mother and/or father into a home (never mind my mother and I get along much better when we’re not sharing a house, never mind stress is one of the things which leaves me with a temper shorter than a wet cowpat, and never mind my existing depressive illness would only be exacerbated by the whole shemozzle…). My brother, who is currently living in my parents house, and shows no disposition to move out, probably won’t get the same sorts of social shunning. I’ll also get the same thing in relation to my in-laws, even though I’ve made it equally clear to them I will not be providing homecare for them (and even though they have two other daughters-in-law to rely on).

    However, my depressive illness is showing me another sector of the whole business where sexism comes into things as well – I discovered this when I was undertaking a phone interview with the Silver Chain (a volunteer organisation which offers home care for people in my state – Western Australia). Some of the questions assumed I was the primary housekeeper (I’m not – he is), assumed if I had someone else living in the house they’d be able to provide the monitoring I need to ensure I take my medication (he doesn’t – heck, he doesn’t even take his own meds regularly), and basically ran on the assumption that if the house was clean, and the dishes were done regularly, I obviously didn’t need any assistance at all (which is pure bupkis, since I still need help with taking my medication regularly – I have trouble getting from “I should take my meds” to “I have taken my meds”, and having someone check in regularly to ensure I’ve been managing this step would be a great help).

    My partner is no more competent or qualified than I am to be providing in-home medical care and monitoring, and I see no reason why he should be expected to do so, other than the unenviable truth of his sharing accommodation with me.

  21. As an RN, I want to thank you for pointing out the power imbalance and how it can work BOTH ways. You’re right: people focus on caregiver fatigue and second shift, but they’re making a lot of assumptions about the level of care. My education & training doesn’t just make capable of providing a very high standard of care, though it does do that. It also allows a level of professional disconnect. I’m telling people this all the time in the hospital when I have to “get all up in their business” as one lady put it. This IS my business. I know they can’t avoid awkwardness, but I am a professional, and it eases their minds to hear me reiterate that in situations in which they feel weird.

    I will never, NEVER provide care for a member of my family. If the power imbalance gets strange with just a spouse providing care, how much more so if the caregiving spouse has societally-acknowledged authority in that area? That’s more power than I want (or should have) over my kids or husband or parents or siblings. My mother was temporarily placed in a mild version of this role when I was severely burned at 17 years old. Since the burns were to both hands, I was not able to bathe myself. At 17 years old, that is some AWKWARD CRAP.

  22. Meg Thornton – I guess one way in which the difficulties my mom and grandma had (which I mention in my above comment) is that my mom has very firmly told me that when the time comes I am to just find a good nursing home for her and that I am to never try to care for her myself. It’s a relief knowing she feels that way, especially since I know now that my disabilities have become as severe as they have, that I wouldn’t be capable of taking care of her anyway (and I frankly know it won’t even occur to my brother to do anything of the sort).
    .-= Rosemary´s last blog ..2009 Fall TV =-.

  23. My gut tightens when I read about caregiver burnout. I start looking around for signs of danger. Why? Because no matter how real it is (and I will never deny that it is real), it’s all anyone ever talks about. In great, great detail.

    Here’s the problem: when caregivers burn out, they have the option to leave. They may not find the option acceptable, but the option is there. And in addition (or instead), they can talk endlessly about how difficult life is for them because of us. And will at least in many common circumstances get the sympathy they want.

    When disabled people burn out because of our “care”givers, we can’t leave without losing assistance, possibly without dying. We can’t complain without accusations of ingratitude, and most people haven’t a clue what there is to complain about. We can’t even anger our “care”givers without risking losing vital care, sometimes without risking our lives.

    The ability to act on caregiver burnout is a privilege. Those of us “cared” for just have to endure whatever burnout comes our way.

  24. Amanda, I still stay up some nights worrying about the fact that, as things stand, Don can’t leave. Where would he go? How would he get there? It would take him months to get things sorted for government assistance services, so he’d have no income. A place to stay that’s accessible is difficult to find, and that’s assuming he has the energy to look for a place while dealing with whatever fallout of his decision to leave. If I’m the only person providing care for him, what the hell happens to him if he leaves?

    When we base the amount of financial assistance someone gets on how much income their family members have, and have any caregiving done by or controlled by family, we put people with disabilities in that situation.

    We set up a bank account that only Don has access to and have been putting small amounts of money into it ever since. If he needs to leave, I want him to be able to, at least financially. I never want him staying here because he has no place else to go.
    .-= Anna´s last blog ..Can’t I make you understand / you’re having delusions of grandeur =-.

  25. @ Amanda – yes, thank you. This is something I’ve been needing to articulate for so long, but haven’t been able to. We don’t have the option of leaving, sometimes. We just have to endure, to go on and on, and it really makes me sick sometimes, to be honest.

  26. I’m terrified of what would happen if I ever had to leave my husband. He isn’t caregiving in the typical sense of the word — but he does more than half the housework even when I’m not working, and his contribution to the finances is what keeps us afloat; I’d never be able to live on what I get even when I’m pushing myself to work a full-time office job. And I know it puts a strain on our relationship — both the greater amount of household work that he has to carry and the financial troubles we face anytime I am not earning my optimal amount. It does, even if we are still happy and our relationship is strong and healthy right now — it just does, it strains us, it puts an unnecessary responsibility on him, and it’s not fair to me to be dependent on his happiness in this relationship to have access to that help.

    If we were well-off, we might be able to bring in a housekeeper a couple times a month or something. That would be a huge help. But then, if we were well-off we’d be living in a home with a dishwasher (hand-washing the dishes is one of the top 3 most time-consuming chore that neither of us likes having to do, and which is really tough for me to do at all) and floors that don’t get dirty ten seconds after they’re vacuumed, among other things. Our laundry wouldn’t be three flights of stairs down from our door, and I wouldn’t be having to climb two flights of stairs just to get to our door at all.

    But we’re not. I grew up in poverty, and he grew up comfortably but not so comfortable that his future was automatically secure for him once he became an adult. And honestly, if we were to ask for help from his family, we’d be in the same boat, but with a different set of people this time. I’d still be dependent on our relationship remaining healthy, and now he’d be dependent on his parents having good will and enough resources to support us… etc…

    It’s tough. It’s not fair that so many people are stuck in these positions. And you know what? I AM in a stable relationship, that is strong and healthy right now. That is a huge privilege that I have over many other PWD. And we’re on shaky ground even with that. It isn’t fair, not to anyone.

  27. P.S. The cultural expectation that a partner be a caregiver if their partner has a disability is a huge factor in PWD’s feelings of undesirability in the romantic market and a huge factor in many temporarily abled people’s adverse feelings to partnering romantically with PWD.

  28. Beautiful post. I work as a nurse supervising nurses aides in home care. I see our role as giving respite to families for a few hours. No one can be a 24/7 caretaker without risking their physical and emotional health. Even with help, it’s a huge responsibility. I wish the best to you and your partner.

  29. It puts me in role as adult, and Don in role of child…

    Does this describe the feelings within your marriage, or is a statement on the relationship of care provision and disability in general? It’s hard to challenge such a personalized account filled with many other good points; nevertheless, whenever self care is linked to concepts like “adulthood”, it makes for very uncomfortable reading.

  30. Ack. Cam, as soon as you pointed that out, I can see the problem in what I wrote, but was completely ignorant until you did.

    I’m sorry. That wasn’t what I meant, in terms of people needing care being child-like, but it is totally what I said.

  31. The one thing that makes me think about all this, is the imbalance of genders in the workforce of people who work in these jobs. Not only does the majority of care fall to women when they do it for their loved ones, by and large, the people providing this care are usually low paid workers with limited education. (I am shocked that someone has someone come into the home to do hygenic stuff and is a nurse, and not a CNA/HHA/PCA.) It’s similar with daycare. We may be empowering ourselves by turning care over to someone else (and I do understand, I have a disabled son AND I am a nursing student), but are we also adding to the exploitation of women? The working conditions can be harsh, and the pay low, and the jobs are often dead end. It is something to think about.

  32. … Ann, you have to be kidding me.

    Yes, the fact that women dominate care fields is a huge concern.

    But to turn that around into a guilting “think about it” for people who need assistance to be able to live the lives they want to?

    Do you realize exactly how serious the ramifications of “just do without” are?

    Do you think maybe you have a little bit of privilege getting in the way of realizing the power imbalance in this relationship?

    No, having a disabled child does not get you out of your abled privilege. Not any more than men having daughters gets them out of their male privilege. Men having mothers, sisters and daughters has not stopped them from beating, raping, rendering helplessly dependent, and often murdering other women, not for the whole of human history. No more, then, does having a disabled child somehow make you more trustworthy or credible in the arena of disability.

    I know it might be tough to hear, but consider how tough it is for the disabled people who don’t have your privilege in the first place before complaining about the toughness of having your privilege shown to you bluntly.

    Who is the “we” adding to the exploitation of women? Why do you put that responsibility on the shoulders of the PWD who might lose their independence altogether, and who are often living on pathetically insufficient disability subsidies, rather than the direct employers who pay such shitty wages and offer such awful benefits? Or the society that creates a situation such that women are disproportionately represented in care fields and their work so thoroughly devalued?

    Maybe the solution isn’t to pull that frankly cruel turnaround you just did on PWD. Maybe the solution is to challenge the ableist power structure that creates this shitty situation in the first place.

    It is something to fucking think about.

  33. This post really bothers me, but Amanda and Cam basically wrote what I was thinking.

  34. I can see why, Erin. *nodnod* I’ve spent a lot of time thinking about it since Amanda, Cam, and Rainbow (over in my DW) have left comments expressing concern about it all.

    I’m wanting to revisit the topic, but I haven’t sorted out the best way to that yet. I’m thinking of asking some other people to guest post on it, because I don’t want it to get lost in comment threads/edits.

  35. thanks for this! I am conflicted about my responsibility to, for, and with my husband who has Parkinson’s. I struggle daily with these issues. Thanks for your awesome post. Inspiring and realistic.