From: The Disability-Research Discussion List <DISABILITY-[log in to unmask]> On Behalf Of Mitzi Waltz
Sent: Thursday, May 10, 2018 6:51 AM
To: DISABILITY-[log in to unmask]
Subject: Re: [DISABILITY-RESEARCH] burden

 First, I agree that it's important that peer review needs to stay anonymous, so the original post was a bit off the mark.

But it's a legitimate question, and one that I've been grappling with over the last year, when I've moved from teaching in a disability studies-informed environment and into a 'disability and development'/global health environment. The UN's pervasive use of the 'burden of disease' concept has now been extended from areas where I'm sure we would all agree there is indeed a 'burden' (e.g., no one's life is enhanced by contracting preventable conditions like leprosy or getting a helminth infection because you are forced to rely on dirty water) and into describing living with physical differences or the lifelong consequences of contracting a communicable disease as coping with a 'burden' or being a 'burden' that costs governments money.

I feel rather the same about the DALYs (Disability Adjusted Life Years) concept, which is intrinsically based on the idea that bodily or mental difference is a 'burden' that ruins/shortens your life.

And at the same time, I recognise that this loaded language is intended to provoke a positive response from people who might not otherwise be willing to give a toss. It's a double-edged sword, however--if a government is moved to provide services to avoid negative consequences, it hasn't changed its views at all, really, it's just been put into a corner and has to response by being seen to do something.

In the specific example of parents talking about intellectual or developmental disability, there is a similar but slightly different dilemma. I've been in their shoes, so I can tell you, there are times when it can feel 'burdensome' and there is a need to engage with that feeling on the part of researchers. It requires hard physical and emotional work from you, the parent, because the state is unreliable and doesn't actually care, and that work can feel thankless, repetitive and difficult, and therefore burdensome. How parents conceptualise these facts isn't always going to be 'politically correct' and we can't require that of them either - although hopefully our work can provide some help, not in terms of policing terminology but in terms of shifting attitudes and seeing to it that parents aren't in a situation where caring doesn't become truly 'burdensome'...

Mitzi