Juliet Thomborson spoke with a person who is disabled and employed as a care worker about some of the issues that come up around disability and work.
In what ways have you noticed the latest National government making life harder for you (or other disabled people)?
The benefit ‘reforms’ have made life harder: if you’re not recognised as being so disabled that there’s no chance that you will ever be able to work then you will be on a jobseekers benefit and be expected to look for work unless you’re able to spend a lot of time and money seeing doctors to keep a current medical certificate on file.
There’s a general lack of funding for health care. A lack of funding for preventative health care. A lack of funding for national disability and mental health services.
The underfunding domestic and sexual violence services, causing some services to become unavailable in some areas. Disabled people are more likely than average to be victims of violence.
And ACC…. just ACC. Most of my clients are on ACC support and I can honestly say nothing would surprise me from them anymore.
There’s a general attitude to that gives legitimacy to and encourages harmful opinions. Take those posters in the window at WINZ as an example – the suggestion is that your unemployment is caused by your attitude and your attitude alone. If you’re having trouble finding work because you’re disabled, that isn’t something that can be fixed by changing your attitude. So WINZ sends a pretty clear message there – both to disabled people and to society more generally.
That raises the topic of disability and what constitutes ‘ability’. What do you think of the ‘social model’ of disability (that disability is the barriers society creates for people with impairments)? Are there any theories you prefer over that?
I generally agree with the social model of disability. The number one thing that gets in the way of me getting jobs is the fact that retail workers are expected to stand. Why? Why not have seats behind the counter? Personally I manage just fine if there are no stairs and I’m not expected to stand for more than about an hour at a time, particularly when I have good painkillers. The reality right now is that retail work (where my experience is) expects you to stand for four hours between breaks, stairs are common, and medical gate keeping means I can’t get painkillers that work. It doesn’t have to be this way.
Exactly. We’d add that this is an example where it’s not either/or but both/and – a strong union culture that takes up issues important to disabled people is going to create a better life for all workers. These are questions of workers’ rights. The social model pushes the questions around disability further.
There’s also the side to this where people’s thoughts about disability and disabled people are influenced by what they think disability is. The way disability is constructed in popular imagination is very visible to me both as a young disabled person and as a caregiver. I once had a government employee assume that I had never worked with disabled people because I said my experience was with rest home work. A majority of people aged over 75 report some form of disability,but people have this idea in their head that being elderly and being disabled are different things, therefore elderly people don’t count as disabled.
Conversely, since symptoms of disability are thought of as being a thing for older people, younger people’s impairments get written off. When people see me with my cane they often assume I was in an accident or had a sporting injury because that’s what’s culturally thinkable for someone my age. People aren’t comfortable with the idea that I was born with this and that I will die with this, but that I will not die from this. Things that affect young people and never go away are supposed to be terminal. People don’t really know how to deal with chronic conditions that don’t get better or worse. They’re not part of our cultural narrative. When people don’t think of a group as existing, services targeted to that group struggle for visibility, support, and resources. I know I got very little training around supporting older disabled people beyond assisting with physical movement… this was in a course called “care of the elderly and disabled.” Even when we’re in the title of the course we end up taking a back seat.
Disability is, sadly, a relatively new topic of discussion for activists. Is there anything in particular you’d like abled activists to know, for example barriers for disabled people being involved that you often see at events / websites / etc?
Assumptions hurt. It’s never safe to assume that someone doesn’t need accommodations, and it’s never OK to assume what someone can or can’t do. Because, statistically, your event is going to have disabled people present and you should plan for that.
The vast majority of disabilities and chronic illnesses are not easily visible. You interact with far more disabled people than you think you do. People know what they need. Ask them, listen to their answer, and act on their suggestions.
Disability access needs to be a requirement for events, not an afterthought. I see things like fundraisers where they have a minimum amount for the event to go ahead and things like sign language interpreters as a stretch goal. No. If you can’t afford to make your event accessible for disabled people then you can’t afford to have an event. We are not an afterthought. If there’s only one way to contact your group/business/charity/etc, chances are there are people trying to contact you who can’t use that method. Variety is good. It’s really helpful to know what your event venue is like ahead of time. Seeing things like “the march rout is flat” or “the room has fluorescent lighting and two steps up to the door” on a Facebook event page can easily make the difference between attending, not bothering because it doesn’t sound accessible, or putting in time and energy to get there only to find that it won’t work for me.
If you are planning an event and already know who will be participating and are able to talk to those people then you have no excuse for not asking them if they need accommodations. That includes not asking because you thought they were able-bodied and neurotypical.
There is a truly massive variety of things that could be considered disabling. Things like involuntary movements or vocalisations or the inability to keep track of time could require accommodations just like any other medical issue but are less likely to be recognised and tolerated.
Learn sign language. Seriously. If you don’t recognise NZSL when you see it then there’s a good chance you won’t realise when someone is trying to use sign alongside other methods of communication. Case in point – I only just realised that one of my clients uses facial grammar when he speaks, and that he will sometimes say one word and sign another at the same time to form a sentence. I’ve known him for almost a year and was missing key parts of what he was trying to communicate that entire time. It only took two classes to start to fix that gap in understanding. If you have the opportunity and ability to learn even a little bit of NZSL, do it.
Disabled people need to be included in everything. Absolutely everything. Driving lessons, sex ed, vacation packages, sports, hobby groups…. if you’re organising a thing or setting up a space then you need to consider disability access.