Either/Or – Both/And

One of the ways mainstream media talks about things is in binaries. People are either book readers or they read nothing at all, for example. Women are either sluts or they aren’t having any sex at all.

People are either caregivers or they have disabilities and thus are cared for.

Or so I keep hearing.

So, when we talk about needs relating to children with disabilities, somehow the idea that there may be parents with disabilities who are primary caretakers for these children is missed. When we talk about caring for elderly or disabled parents or extended family members, we don’t talk about how to do that if you are also disabled. Because people with disabilities are cared for, right? You can’t be both cared for and caring for someone, right? Right?

Right now, I’m getting a lot of literature sent my way about “caring for” a spouse with Cancer. That literature will often include the information given by Family Caregiver Network Society: “We understand the common feelings of isolation, helplessness, exhaustion, stress, anger and guilt faced by family caregivers.”

All of that is often true for caregivers. But for some of us, that stuff is unrelated to being a caregiver because it comes from our status as people with disabilities in the first place.

I think this feeds into the ideas of disabled people as passive receptors of whatever, who never act on their own, who can’t act on their own, and whose only stories are those of being a burden. These perceptions feed into how and what support is given to families affected by disabilities that have long-term caring needs, what accommodations are made for meetings with caregivers (I was invited to a meeting in a space that isn’t wheelchair accessible, for example), and basically how society views everything to do with being disabled. Suddenly, your whole life is perceived as a burden to others, with nothing to live for and nothing to look forward to.

I know there are readers of this blog who are disabled and care for others, either in their homes or workplaces. I want to talk about how we are both disabled and carers. 1

  1. ETA: It is not my intention to imply that if you are not both/and in this case, you are somehow a burden or not worth talking about, or ruining it somehow for everyone else. I am just focusing this particular discussion on that bit of intersectionality.

16 thoughts on “Either/Or – Both/And

  1. As a PWD, I hadn’t even thought about this but now realize that indeed, I have started to feel a little bit anxious about how I will be the caregiver for my Mom when the time comes. You are so absolutely right about binaries. They really do render one or the other invisible because they trick you into thinking that you can’t look at both sides at the same, thus one side is erased. – G

  2. It’s an issue in my house – not articulated, no fancy mailings – but it exists. I’m the baseline, “sick” all the time. But, get this, other people around me aren’t 100% “healthy” all the time either.

    So when my mom has foot surgery, and little healthy sister is off somewhere, I feel like I must duct tape that woman to her chair so she can take of her feet. “What do you need?” must have been my first words.

    Unfortunately, I can’t always help, the pain is too bad, I’ve just got to stop.

    But she has physical signs – she has proof! She’s no malingerer, claiming pain for how long now?

    So it’s the hierarchy of illness as well. Visible (or easily seen medically) vs invisible.

  3. I just wanted to say thanks for posting this. I’m an older sibling and a daughter of women with disabilities. I know I’ve thought about this intersectionality before in a limited way, but this post is definitely useful food for thought for me.

  4. I am disabled and I am the mother of two young children. It is very difficult at times because there are things that I would like to do with and for them that are out of the question. My kids have to grow up a little faster than others because my disability means that they have to be more independent. I have to really reconceptualize what my idea of parenting means and this has meant more of an interdependent relationship than a relationship of pure dependency for my children. Sometimes I worry that I am robbing them of their childhood but at my better moments I realize that my children have learned to be independent and they really learned to work as a team in order for our family to function.

  5. I worry a lot about my mom, as we both age. I don’t currently need full-time care, but I do need more than someone of my age would be expected to need, and my mom does some of that for me (drives out of her way to make sure I get to family gatherings, drives the hour to and from her home to take me to doctor’s appointments to be an advocate for me, helps me out financially from time to time, etc.). But we’re at the ages now where I “should” be starting to do things like this for her instead of the other way around. She has her own health problems that are progressing with age and it worries me. What will we do when she can no longer not only not take care of me in these ways anymore, but will need more help herself? I was so relieved when she got married a few years ago (and to someone with adult children himself), and when my brother and his wife came back to the state we live in, so at least I know there is more support available to her than “just me.” And, I mean, I’m less worried for me and how I’ll deal with things than I am for her. She’s spent so much of her life caring for others, for me, for my brother, for her own aging mother before she died – and it seemed so unfair to me that she should be stuck with just her disabled daughter to try and help her when the times come for HER to need caring for. So, yes, I am relieved to know she is not alone anymore.

    I don’t know if this is fully appropriate to this posting, but it came into my mind very strongly when reading it.

  6. I deal with this binary daily as a disabled pediatrician. Physicians are often assumed to be unaffected by illness, acute or chronic, by their own culture. I often feel pushed to the outside hearing other doctors or nurses talk about patients as though they inhabit an alien universe. The problem is that they are talking about my universe!

    Just today, one of my medical students made a pitying comment about people with cerebral palsy. This is a student who has been looking to me as a knowledgeable resource for the past two weeks. Suddenly, she had unknowingly reduced my identity to an object of pity, as one of “them.” Yet I was the same person standing there, hanging onto our wheeled computer for balance, adapted reflex hammer sticking out of my white coat pocket, who had been teaching her about asthma and diabetes and seizures. I educated the team about some of the damage of pity, and pointed out some studies showing kids with CP are as happy as kids without. I also mentioned I wasn’t the only physician with CP out there. She seemed receptive. But there are thousands of students out there.

    It’s surreal, is what it is. There are wheelchairs all over the hospital, but not full of health care providers. The patient rooms may or may not be accessible, but the operating room seldom is without signifigant adaptations. There are methods to adapt equipment, but we may not be permitted to use those adaptations. Earlier in my training, I had to fight for months for basic acommodations, while by the way, being a medical student and being a patient.

    The patients are the ones who stay in their rooms and we are the ones who take care of them, even if we have the same conditions. I don’t have a problem playing for both teams, and to the extent that my patients are aware of my dual citizenship, they seem to appreciate my empathy for their experiences, but the health care community is often uncomfortable with me and my peers who live a double identity.

    It’s OK to be both!

  7. Things are definitely not set up for parents with disabilities. If it’s acknowledged that we’re allowed to parent in the first place, the physical and social environment then conspires to make it as difficult as possible. Examples abound, but here are a few:

    – I’ve ranted about playground accessibility before. Occasionally there are playgrounds built for accessibility by kids with disabilities, but even these aren’t built with disabled parents and other child-carers in mind. However, the vast majority of local playgrounds have very poor accesibility indeed. No pathways; deep sand softfall completely inaccessible to wheelchairs and mostly inaccessible to many people with mobility disabilities; no seating or very uncomfortable seating, often facing away from the play area; full sun; no toilets; and the list goes on.

    – School accessibility. I suppose they’re thinking to themselves “well, we’ll modify a classroom if a disabled kid enrols”? What excuse could there be for State schools to be inaccessible? But even if there is no visibly disabled kid currently enrolled in a particular school, parents, grandparents and carers with disabilities are right here, and are being ignored. Classrooms with narrow doors and a step up, inaccessible school office, no accessible parking, no seating at child pickup areas, no information provided in alternative formats; and requests for accessibility dismissed or ignored.

    – Accessible parking. Argh, don’t get me started. Any parent with a young child who parks then walks (hobbles/totters/etc) out of the blue space better watch their backs.

    And what happens when both parents have disabilities? We went through a brief patch recently when we were both mostly out of action, and realised just how tenuous our lives are and just how much we depend on having one abled partner in the pair. (We’re not eligible for any sort of government assistance.) The costs of outsourcing various housey duties on top of the mounting medical gap costs were a fair slam.

  8. I have experienced this in relation to my depression and anxiety. I am the mother of two children, I previously worked as a social worker and now am a therapist and we also have my elderly father living in a flat at the back of the house. When I ‘fall in a heap’ mentally and emotionally, so does the whole family (pretty much). I think it is only at that stage that the family realise (and appreciate) everything I actuall do around here and do for them.

    As for work and clients, well I have been told so many times that I shouldnt be a social worker or therapist because if I am depressed or anxious then obviously I am not managing my own problems so how can I possibly help anyone else manage theirs? You know, because gods forbid that a therapist actually be human and all… Personally I like it when a therapist or social worker (or whoever) actually has some personal experience with my issues because then I know they might ‘get it’ a bit more than someone who has no experience with such issues. Although technically, if your therapist is a GOOD therapist, they should be able to ‘get it’ regardless but still… and that is just my own personal preference, not everyone is going to feel that way. But yeah, carers need caring for as well and that needs to be remembered and reinforced.

  9. So true. I am a PWD that works at a group house that is home to PWDs. Now, my disabilities are of a different type than the majority of my clients, but sometimes I encounter very ablist, othering language and it is very hard to address it.

    I’m also studying to be a therapist and I have mental health issues. I encounter language in my studies that assumes that providers of care don’t or haven’t needed care themselves. I’ve also encountered people who assume that my history with mental illness disqualifies me from being a therapist. That opinion is shockingly common in therapy. Now, I do understand the danger of someone who isn’t able to separate their issues from that of the client (ask me about my nutritionist who was treating me for an eating disorder while in recovery from an ED herself. Not a good thing.) But to say anyone who has had mental health issues shouldn’t be treating others- now that is a ridiculous notion. I think some of the best therapists I’ve had are the ones who have gone through the fire and came out the other side, singed enough not to forget what it is like in the furnace.

  10. Thank you for this post. I am autistic (with other assorted mental stuff going on), as is my partner. We live together semi-independently (still relying on parental support for money and some other important things). He understands me better than anyone I’ve ever met by ten thousand miles, but daily living stuff is really, really hard, and there aren’t really any supports or resources for people in our situation. All of the books about being in a long-term relationship with an autistic person–in addition to being ableist as hell, generally–assume a neurotypical woman and an autistic man. Not something I can relate to at all. I know that our situation is not uncommon, either.

    In our relationship we’re both caretakers and cared-for. It’s complicated and oftentimes hard. Worth it, but hard.

  11. I am cared for in part by my partner, and am the carer for my young son at the same time. I’d never thought of the fact that I’ve never before seen anything about this either/or dichotomy and the idea that one can’t be both cared for and caring for, so thank you for the food for thought.

  12. I feel weird because I want to work with DD people and I’m a DD person who passes as nondisabled (or stoned, or a manic pixie dream girl, or whatever). So then I get to have weird experiences with people telling me what a nice thing that is to do and how they could never do that. I want to say, “I like being around DD people because we usually interact more easily than I do with people like you. I’m not choosing to work with ‘difficult,’ ‘frustrating’ people because it will make me miserable and I’m just the most saintly person alive. What kind of person do you think I am? YOU’RE difficult and frustrating.”

    also it’s really weird to try to work with ASD kids if you have ASD, because everyone just assumes that you understand why it’s bad for the kids to move their hands around in a certain way. Even if you have mentioned that you have ASD, it just doesn’t register, and it never occurs to them that they could be making you feel scared because that’s how you move your hands around too.

    I hope this is on topic because it’s about jobs instead of caring for someone who is a family member or partner. But it’s a similar Us vs. Them divide, and can be scary when you are actually somehow both at once.

  13. oh, and also: even though some people who work with ASD kids are really harsh on the kids in an attempt to get them to look and act as normal as possible, they don’t seem to imagine that anyone who works with ASD kids could actually be a former ASD kid. Or that anyone who passes could have been an ASD kid. So, apparently, while they’re working to make ASD kids pass and do “normal” things…they actually don’t believe in the existence of ASD adults who pass and do “normal” things. Which is like–do they think that their students are doomed to “failure” (I don’t think not passing is a failure, but they do) or do they think that their students will be sucked into a black hole upon achieving independence?

  14. My wife doesn’t identify as disabled though the has mobility impairments and chronic pain and trauma in her past. I know she discounts her own pain and fatigue; she says so. No matter how much she hurts she believes I hurt more. It’s heartbreaking. My pain doesn’t make hers any less. There’s no way to compare how much we hurt so we can’t know. And it’s not even a meaningful thing to say: she hurts so she deserves relief. That’s all there is and all there needs to be.

    She does a lot for me. I like to do things for her when I can and she’s not comfortable accepting it–because I’m the one who’s disabled see? It is a very weird argument to have, trying to get her to stop yelling* at me to not do the the dishes and let me rub her feet when she’s been at work all day and stood up cooking dinner. I work too but she does most of the cooking.

    * She’s yelling because she’s in the bedroom, not because she’s angry. Just to clarify.

  15. kaninchenzero, I can relate to that bit about your partner saying that you are the one who is disabled, so she should look after you more than you should look after her. So many of my friends and loved ones have their own disabilities and health issues, but it seems that mine “outrank” theirs somehow and they often feel guilty if I do something for them or if they fail to do something for me. My bestest friend and I often have the argument “no, but you are worse off than me so I should do X” “nono, don’t you see, in this particular case you are more disabled, so I should X for you this time!” etc. It can be kind of exhausting.

  16. I hate the “your disability is worse than my disability, so you are more useless” game. Especially since I “win” the game a lot.

    That stated, although I am totally useless for most physical chores and activities, I function as the free therapist for my friends and family. So I “care” for their mental state and help them get through tough times.

    I find that most people I interact with are disabled or “quirky” in some way. So I tend to assume people need accommodations unless they state otherwise. I wish others were open to this viewpoint. I think it would really help in Architectural and Engineering designs if it was assumed that people with a wide range of Disabilities would be utilizing their creations.

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