Access by Various artists

Thanks for this, Chelle. And best wishes for dealing with all those challenges - particularly finding an accessible house in Wellington.

Thanks Hilary. I’m already better than I was but it’s not a fun time. There’s some stuff I need to sort out before I might feel like I have my head above water again but I think I’m heading in the right direction.

Doing a PhD is tough, regardless. Have you found enough interviewees? I might be able to help if you are looking for more.

Hi Chelle, I think most people with chronic disability will be able to relate to at least some parts of this article, especially how isolating disability is.

Personally, while my disability isn't rare, the stigma attached to it (epilepsy) means it's incredibly difficult to meet up with others simply because anyone who can hide it, will, often out of necessity- employment, accommodation are still at risk. Depending on where in NZ one lives it's possible to never meet someone else in real life with the condition. While I do know people in the real world, like many people with all type of disabilities the internet has been a life saver. The only people in the world who I can talk to are all literally on the other side of the world whom I met initially through overseas forums. Skype is a wonderful invention :)

I've associated with many people over the years who have a variety of disabilities. There's 2 common denominators- at some point depression which is quite logical when you think about it; the other being battles with the health and welfare system, usually over little things that prevent us from improving our quality of life- even obtaining/holding down paid employment or study. There's a disproportionate amount of people with disabilities who are quite capable of working stuck on benefits because the system seems to want it like that.

And so many of us fall through the cracks when it come to getting support- "under 65? No dependants? No mobility problems? (Usually the case with hidden disabilities) Not on our DHB list of "approved" disabilities for home help? Then tough, you're on your own, you won't even get an assessment.

I read your story and know exactly how you're stuck in that rut right now. I'm glad it's not depression, that's just horrible. All the best.

Oh, it’s not the PhD at all that’s the tough bit of my life right now. It’s everything else that’s getting in the way of me working on it properly and also just life in general. Having to take a break is not ideal because it’s the only thing in my life I’m enjoying. I’m nowhere near looking at organising interviews yet but I have some ideas. I’m probably looking at doing interviews in my second year I think. It’s only a component of my research. I’ll get in touch closer to the time though, thanks.

Actually... I’ll get in touch quite soon if that’s ok. Thinking about it, it’d be good to plan a bit well in advance for interviews, especially while I have some time on my hands. There’s no harm in talking and thinking about it. I’ll email you when I have my thoughts together.

Thank you so much for your kind thoughts and thoughtful reply.

While disability encompasses so many diverse experiences, there are common threads that many of us can empathise with as you’ve demonstrated. In my research so far I’ve found that people with disabilities are also taught from young to distance themselves from others with disabilities, as I was, which is not ideal and I would think must lead to further isolation.

I haven’t quite figured out how to make the internet work for me in a positive way but I’m working on it. Like many others, in recent years I’ve found social media to be such a toxic environment that any benefit is outweighed by quite a cost to my mental health. It can be a tricky thing to manage. I used to find it a great tool for connection so I’m thinking through ways to get back to making it a positive thing in my life again.

Happy to help. I'm part of the supervision team for a student who has recently submitted her PhD on a disability topic. Finding interviewees who fitted the eligibility criteria and then found the time and energy to be interviewed at a time and place that suited them both was a lot harder than she anticipated. Of course, once she did she got some great and original data.
I have a vuw email.

Ok, great. Thanks very much.

What an eloquent piece Chelle, and a good thought to give the interviews a bit of preliminary planning. To quote the Quaker phrase it "spoke to my condition"

Thanks very much. I think the best thing about writing this, aside from being allowed to be totally honest, is finding out people can relate to it. It’s not great that there are others who feel the same or who have experienced similar but it helps me to know people might take something from it.