On Centring Caregivers in Disability Discourse

It’s really off-putting when a group of disabled people are trying to have a conversation and a caregiver butts in with “you’re wrong. I know, because I care for someone with such and such a disability”. This makes me squirm. Even worse are those disability organisations or charities that have only parents and caregivers on their boards. “Oh, but it’s all right, my brother has this condition. In fact, we all have family members with this condition!”

It’s troubling enough that there are so many such organisations out there that just don’t have anyone who actually has the disability concerned on their boards – it’s as though we can’t speak for ourselves or have unique experiences people who don’t have our disabilities can’t relate to or advocate about! – but that’s not directly what I want to talk about today. I want to talk about who gets to run conversations about disability and who gets to run the narratives. All too frequently, abled caregivers and family members are centered in conversations that really ought to be run by and focus on disabled people.

The thing is, abled caregivers and family members, while pretty involved in the lives of those they are caring for, have their own perspectives, which is great. But treating those perspectives like substitutes for those of disabled people themselves makes me really uneasy. So when the perspectives of disabled people get pushed out because carers are brought to the forefront – in legislating, in daily conversation, in interviews – for me, that’s a clear example of ableism run rampant. Because it seems like those in charge think that disabled people aren’t worth listening to or are incapable of informing their own opinions.  The dominant narrative is that abled people are better worth listening to, and I get sad when abled carers and parents just don’t seem to realise that they’re dominating conversations at the expense of disabled people. (It reminds me of those times when men start talking loudly about feminism and everyone else in the room has to keep quiet, is denied a chance to speak.) And “advocacy” of disabled people shouldn’t be at the expense of disabled people.

Of course, it’s usually particular kinds of caregivers who get centred – who centre themselves – in these conversations: abled ones. As ever, it is those with multiple roles who are pushed to the margins, because their existence is held to be just too complicated to deal with. I think acknowledging disabled people who are also caregivers would be a really good start to decentralising the place of abled caregivers in these conversations. Moreover, acknowledging the multifaceted nature of experience brings out the nuance: we really have to engage with the dynamics of different people’s situations here – what are the power dynamics like when you’re both in a position of power and disabled? how do these conversations apply to you? – rather than defaulting to listening to abled parents and caregivers.

Now, I’m not saying that abled caregivers and such should have no place in conversations about disability and ableism, you understand: I’m saying that such folk have dominated conversations about these matters. There is a place, it just shouldn’t be a place that replicates the hierarchies present in society already: hierarchies around who gets to speak, who gets to do the representing. The effect of this – and you can look at a range of newspaper articles or documentaries or whatever you please – is that disabled people get silenced. The effect is that, more often than not, it becomes all about portraying the caregiver as angelic and the person cared for as a burden they have kindly taken on.

And that’s not on.

[Cross-posted at Zero at the Bone and Feministe]

7 Comments

  1. I left a more substantial comment at Feministe, but this is an awesome post, Chally. Bravo.

  2. Just tonight I’ve been deciding how to vote in the Australian Election, and considering where to rank Carers Alliance. It’s a party that claims to represent both carers and people with disabilities… but obviously the plight of carers is the central concern, since the party is named for them. I’m certainly in favor of the spending and support they are seeking, but turned off by how they are presenting it — as though caregivers are the only citizens who matter.

  3. I had a big argument somewhere else about this in relation to autism organisations. Everyone else was of the opinion that those who were ‘more able’ (I can’t remember the exact terms used) couldn’t give an accurate impression of what life was like for those who couldn’t communicate, and that their caregivers would have a much better idea of what life was like for those people. The caregiver superiority idea was so ingrained that I couldn’t make the slightest bit of headway, even when pointing out that I didn’t think that caregivers should be excluded.

    I’ve just looked at Feministe and this has been mentioned in the comments there – it seems to be a frighteningly common phenomenon.

  4. Thank you so much for this, Chally. It’s kinda perfect.

  5. I can totally relate to what Marge says, and was going to say something similar. IN the autism community especially, I have noticed that those who actually have autism, are routinely excluded from debates/discussions/activism involving them. We are said to be either too high-functioning to be really representative of the autism community, or too low-functioning to speak fo rourselves.

  6. I agree totally with you that the voices of caregivers should never replace, or be thought equivalent to, the voices of PWD. I’m both a sometime-caregiver and a PWD myself, and it’s very odd feeling both sides of the issue. I don’t want to be spoken for, and I resent it when my caregiver’s voice is prioritised over mine- but as a carer, especially one with disabilities of my own (as you’ve mentioned) I sometimes feel that the very complex way disability affects my life is not always heard.

    I’m still gathering my thoughts about the issue- I posted about it at my blog, but I’m not all the way there yet. I guess the process of reconciling conflicting identities is a long one.

  7. As someone who is at the less severe end of the autistic spectrum myself, I wouldn’t say I could speak for those more severely affected, let alone their carers, but I find it a mystery that the autism community cannot find some way of reconciling the parents and carers of the severely autistic with those who can speak for themselves (verbally or otherwise). Neither are any less the “true face of autism” than the other, after all. Failing to see things from others’ points of view is a stereotypical autistic trait, and yet it’s non-autistic carers who are displaying it here.

    Regarding disabilities besides autism, I’ve noticed in the British ME scene that the two worst charities are associated with “celebrity caregivers”, and both are notorious for promoting treatments which might help people with one fatigue disorder or other but are known to be harmful to people with genuine ME. The medical advisor of one of these is seeking ethical approval to conduct a trial of something called the Lightning Process, an expensive 3-day talk therapy regime which hasn’t been tested on adults with ME, on children with ME (or supposedly with ME), when it is based on a pseudo-scientific explanation of how ME works and has been linked to relapses in people with ME who have tried it.

    These groups let their “members” think they’re running the organisation by letting them do some administrative and publicity work (including ghost-writing speeches for one of the celebrity carers) but they don’t actually pull the strings. The two charities which really do great work are run by real patients, but they deal with specific sections of the ME community (young people and the very severely affected). Among the other decent groups is one run by caregivers who aren’t in the limelight and another is dominated by two doctors who have ME.