I was just browsing Facebook on this dull wet afternoon, when I came across a link to this new blog on one of the disability related pages. The fact that it is focussed on travel got me interested of course, but I’d just like to flag up something I find problematic. It’s a blog written by the mum of a man called Corey, a 25-year-old American with Spinal Muscular Atrophy. She says her blog is about ‘Empowering caregivers’, and writes “At My Sandy Trail, I believe that every caregiver deserves to be healthy and happy. My blog shares inspiring stories and tips not only for making wheelchair accessible travel a reality, but also ensuring that you and your loved one can create unforgettable memories together in a safe and healthy way!”
Sorry if I’m being a bit grouchy, but this instantly sent my mind back to what I wrote here, about people speaking for disabled people when we’re perfectly able to speak for ourselves. Such so-called ‘advocates’ may mean well, but isn’t it a bit patronising for a mum to speak for her son, and document their adventures online? Can’t he do so hisself, so we get his own perspective on the issues he faces rather than that of his mother? After all, this blog would be vastly different if my parents were writing it for me (it would probably have a lot more about making marmalade!) On the other hand, it could well be the case that Corey does not want to blog and is fine with his mum documenting their adventures, so I better not read too much into it. Even so, I still think accounts of disability issues from disabled people rather than their ‘caregivers’ are always preferable.
The Ill-Informed Ramblings of a Cripple 
Sigh… whilst i totally agree that accounts of disabled people’s lives should primarily be coming from disabled people themselves, wherever possible, I’m not sure what your issue is here as she has clearly said (and you quote her) “She says her blog is about ‘Empowering caregivers’, and writes “At My Sandy Trail, I believe that every caregiver deserves to be healthy and happy.”
So in at least the bit you refer to, it seems entirely appropriate that she, as the “caregiver” (hate the term BTW but it’s American phraseology) is talking about keeping herself and other caregivers, safe and healthy. Maybe elsewhere she is overstepping to talk about disability, but she is, just as I am, quite entitled to talk about issues which affect her ability to support her disabled son. After all if she, or any other parent carer, is unable to do their support role because their own health or safety has been compromised or damaged (which it too often is once your disabled child becomes an adult)…who’s going to take on that role? Very much like in a plane “sort out your own oxygen mask before helping others”
I have come across this issue a few times now, particularly within the more politicised disability community, namely that whilst disabled people sometimes quite rightly vent about non-disabled people talking “for” them, it is often the parents in the firing line: yet those same disabled people seem very quick at times to talk about caring or parental issues about which they actually have no experience.
It can’t be both; I am not disabled and so I have no real idea about what it is like to be disabled, esp. from birth and so I try very hard not to talk about things as if I have first hand experience. But I can talk about issues that I experience as the parent of a, from birth, disabled person. Not dissimilar to the difference between becoming disabled and having a lifelong disability. If i try and imagine having a disability myself, I am imagining me but changed…not walking, or talking or seeing or whatever. And that is so different to the actual life experience of someone who has never walked, or talked or had vision.
There’s lots more i could say on this sort of theme, but for now I’ll just refer you to “What is it like to be a bat?” by Thomas Nagel…a seminal short article that I first read as a philosophy undergrad back in the early 80s but which has turned out to be so relevant across so many areas of life. https://www.cs.ox.ac.uk/activities/ieg/e-library/sources/nagel_bat.pdf
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I know what you mean: she has as much right to share her perspective as anyone else. I just wish she wouldn’t do it via her role as caregiver for her son, so to speak. She must do other things, after all.
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