unpacking the hidden disabilities webinar

Today I participated in a panel about hidden disabilities as part of webinar that was run from the education faculty within Monash University. I wanted to spend a little bit of time unpacking some of the ideas that came out of this.

A diversity of voices from lived experience

One thing that I thought was really interesting was across our panel, we had multiple folks carrying lived experience which I think was actually really important. One of the things that I've noticed happen is sometimes, when people are trying to learn about a marginalised identity or something like that, they might just ask one person. One. This can't possibly give you a representative experience because one human is one and can't capture the intricacies of entire communities alone.

There are shared experiences naturally between people who have a shared identity, but if you really want to represent the experiences across an identity, you need to have a sample across that identity and I feel this applies to a lot of forms of marginalisation, not just on the basis of disability. So it was nice to see the gathering of a sample public lived experience with hidden disabilities done so intentionally.

The act of listening

Particularly when thinking about hidden disability, it is by its very definition unseen to those who do not have that experience. There are many ways that could present (from the sensory, the neurological, experience of pain, limited energy, etc.) and these diverse ways make it difficult to try and capture this as a homogeneous experience. So the very first step from my perspective is really the act of listening. The simple design of this as a panel enabled this effectively as it positions lived experience as a form of knowledge and leads participants to engage in a listening practice.

Some of the questions posed and responses I wanted to pass on:

what does hidden disability mean to you?

• As part of this, I said a big part is having disability but not being expected or even believed that you do

How can people create cultures that are more supportive of disability?

• A nice one was speaking about disability as if there are disabled folks present in the room with you (because there will be!). It’s not some far away concern, a significant number of people have some form of disability (and most of those are invisible!)

How can can we make environments more accessible?

• Multiple ways communicate information was a nice one and very aligned to universal design for learning

Challenging misconceptions

• a great point made there was the belief that folks with disability “just need to try harder”. This is actually something we hear a lot. This suggests we are not putting in the same effort as others when in fact we likely are putting in radically more effort and having a compromised outcome despite this.

Responsive support for someone with disability

One other thing I wanted to share to the importance of listening. Some of you may be familiar with the sunflower lanyard which is the hidden disabilities lanyard and this is a way of making visible the invisible and something that I wear myself. It is sometimes a choice to wear it and sometimes not. Some people may feel they must wear it in order to get any support or have the decision made for them, others may feel unsafe wearing it in the first place. Let’s talk about a helpful way to respond to someone wearing that lanyard. Most important is to recognise people's agency so not to come up and say “hey you have a disability. I am going to help you whether you like it or not.” I am aware for instance of people pushing wheelchairs without consent and similar assumptions about what people need or want is sometimes harmful. It tells us that this person thinks they know better for me than I know myself, it creates a lack of trust and compromised our agency. Similar if we notice someone choosing to talk to someone we’re with (e.g. a friend, family member, carer, etc.) about us rather than talking to us directly. To not give us the respect to treat us as agential in our own lives.

It's really important especially for groups that have had their agency taken away in the past that we are all making sure we are appropriately protecting that agency. They are always respectful ways to offer support though. As an example we can say

so that is a really helpful way to invite someone to see you as a safe person for seeking help with and to actually create that accessibility.

Proactive support

Now this in my mind is the reactive form of accessibility, so by very definition it is taking a situation that is inaccessible and trying to stick something over the top to make it accessible. In order to do true justice to the term accessibility, we actually need to radically reimagine the ways our systems, structures, and ways of interacting, to redesign the foundations that they are predicated on.

For too many people with disability, that disability is treated as a moral failing, or that we are too pure to want or need the things others do, or any number of other assumptions or beliefs that treat us as lesser and these to some extent arise because one assumes the ways things are currently somehow represent the “correct way” and that the non-disabled people are doing this nice thing by making little tweaks to that. Good opportunity to do a websearch on ablism, white-knighting, and some other key terms. The foundation is what we need to reimagine; the ways that our buildings operate, reimagining the way that we speak together, act together, etc. and to do it in such a way that allows the greatest variety, the greatest heterogeneity of people to do the things that they want to do. That's really where I think we need to get to.

So there's the reactive and there are ways to ask people if you can help them in respectful ways without judging them, without making them feel like they’re visible in uncomfortable ways such as being thought of as lesser perhaps, but then there are also the “for everyone” approaches. Something that's helpful to think about is the curb-cut effect. You know the curb-cut was put in place to allow wheelchair users access from the sidewalk to cross roads and so on and yet as a consequence of having designed that, a number of other people who don't use wheelchairs were able to benefit. For example, people rolling suitcases or trolleys. All of those people could benefit from having the curb that is cut that way (and it was never designed for that) but they could take advantage of it.

So when we create these Universal forms of accessibility, we are helping far more than just the people who we might be designing it for. And many of the people who are being helped by it might never have even considered something was possible. And some of those people may also themselves have forms of disability that benefit from that thing and when we design it in, everyone is able to have an experience which is more catered to their needs and puts them in a situation where they can do the things that they wanted to do without all of these unnecessary barriers we put up.