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.

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.

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.

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.

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.