We should talk about the lack of sibling blogs.
I’ve written before about the dominance of parent-led disability blogs over any other type of disability blog. I don’t believe it’s a bad thing per say, but I do think it’s a thing worth acknowledging in its own right.
It’s not surprising that parent-led blogs dominate, say, disability news services; people aren’t looking for events, they are looking for support.
User-led blogs are substantial, and I suspect that they are reinforced elsewhere by social networks that take care of that need. Reddit and tumblr both have very user-led disability communities.
But sibling based blogs are conspicuous by their absence. It’s extremely worrying when the only blogger with a disabled sibling on this list is me. Particularly as I don’t write on sibling issues.
Why don’t I write on sibling issues?
Privacy. Parents have complete control of young children’s privacy. They can be very careful about exactly how much or how little information is shared with the world. They can change names if they like, or genders. And so they can weigh-up the potential emotional cost of revealing aspects of their life against the benefits of helping and supporting people in a similar position. And there is no question that looking at blogs like withalittlemoxie.com, lovethatmax.com, and mostlytruestuff.com that such support has helped so many people. And there is also no question that society accepts unquestioningly the parental right to control the privacy of small children. My favourite illustration of this comes from Buzzfeed:
On the other hand, siblings have a much more complex informational landscape. Discussing the needs of my brother requires not only breaching the privacy of a 29-year old man but also of his care staff, my parents, and other siblings: none of which necessarily share my views on either any given situation or my evaluation of the privacy costs.
Anonymity is no help. Even with the more common disabilities, if I know the condition, the age difference between siblings, maybe the general area, and a couple of hobbies, then anonymity starts to look pretty thin. (A non-sibling once tried to tell me about a sibling issue related to AAC, and about four sentences in I was like “do you mean L****?” – privacy is *hard*). The relevant population simply isn’t large enough to support anonymity in the majority of cases.
So this is why I don’t blog on sibling issues. I do recommend the forum at sibs.co.uk as a safe space for these things. I recognise that this isn’t ideal, I recognise that much of the rhetoric around intellectual disability is inherently parental and I’m not convinced that’s for the best (an excellent example is the back seat privacy takes, but that’s irritatingly ironic at this point). But I don’t have a solution.
This post germinated during a number of conversations with sensible people, whose contribution can best be recognised by not mentioning their names here. I should say this, I’m not saying that sibling issues are more or less important than those of users or parents, and I’m not attempting to discuss any of the *many* complex emotions involved. I’m just looking at how occupying a different space in the informational landscape can make it harder to be open, public and to support others in similar positions.
EDIT – sensible point from Twitter:
@joereddington I agree and get your point. I've used the sib chat forums in the U.S. and in Australia. Could that help?
— Ulrika Ehrensvärd (@ulrikacsr) February 7, 2014