225. Normalizing Infrastructure Over Sacrifice

A few weeks ago, I saw a Twitter thread that has followed me around since. I wish I had saved it because now I cannot, for the life of me, bring it up enough to credit the writer. I am very grateful to her for opening my mind.

In essence, the writer, who, IIRC, is physically disabled, recently won a protracted battle with her state, and is finally getting the home aide support she has been needing. And in that win, she picked up on the fact that her husband felt like he had failed her. Almost like he had been found wanting, and therefore replaced.

The writer said that, because the fight for support services has so much gatekeeping and purposeful humiliation built into the process, and because it is also built in that many people give up fighting, it is inevitably part of the journey that family members become caregivers, and everyone is transformed and warped by that experience.

We don’t realize, the writer says, that it’s not supposed to be like this. Marriage shouldn’t have to become all about care giving and receiving. Parents, siblings, adult children, etc–no one should have to center their lives around an unbalanced system of care that allows for no other goals, interests, dreams, and resource allocation.

And yet. This is what is expected. Policies and services exist, but you have to crawl over nails to access them. Lip service abounds from the larger community. Untold numbers of women, especially, give up career aspirations to care for disabled children and elders. Outsiders feast on narratives of romantic love turned sacrificial and noble. A beautiful, strong man who carries his wife up flights of stairs in non-ADA compliant buildings. Female friends who help one another with school drop offs because an aged parent with dementia, or an adult child with intellectual disabilities cannot be left alone. Halo headed lovers and parents willingly giving up sleep. No one is shown getting a UTI because they never get to drink enough water or use the loo; developing stress related health conditions; getting lectured by doctors to lose weight; struggling to manage diabetes and heart disease with no time or support; battling opposing tsunamis of anxiety and depression. You get the drift.

And when the stress takes a toll, it is tempting to say “I failed.” Or “Look at the stats on how many parents of autistic kids divorce.” Why is it so easy to stand on the side of individual failure? Besides the usual, tired bootstrap ideology, anyway?

Well, because we still don’t believe that it’s not supposed to be this way. Where does that lack of belief live?

It lives in the mess of ideologies we continue to internalize about disability. That it is a failure of genetics. The frightening outcome of trusting in vaccines. A failure to pursue “healthy lifestyles” so obsessively that every potential disease could have been mitigated. A moral weakness in women that flips the “on” switch for inflammatory illness. A lack of will to rise above physical pain and mental health disorders. A karmic punishment that must be worked off through suffering in this life, ergo no ease of disability supports for you.

And from there, it becomes easy to shame the idea of claiming a disability identity. Why are you proud of it? That too must be evidence of lack of character.

And so much more. Society is tormented by a horror of disability, and the refusal to normalize its presence and needs is primal, intentional, and phobic. We believe that disability is abnormal, and that is why we don’t want to “encourage” an identification with it.

Because of the reliance on family as caregivers, the risk of isolation, neglect and abuse, erasure of voice (others speaking for the disabled person), infantilization (such as having one’s wheelchair moved without consent, not having agency to decide on meal choices, not being able to decide one’s own daily schedule, having favorite items taken away for having meltdowns, etc), co-dependency (overly enmeshed relationship), and disabled people having to fawn so that their care will continue–these all risk being intensified.

No self-professed progressive society should tolerate this reality. But until we face up to the monsters our psyches have made of disability symptoms and behaviors; until we stop policing how people claim disability as an identity–we won’t be able to act on the principle: It’s not supposed to be like this.


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