Interview with Aidan Matear
‘‘People complain about the restrictions lockdown has placed on their lives, the fact that they can’t go to certain places, or see their family or friends. But that’s pretty much my normal life.’’
In light of our ongoing work in accessibility, we seek out to speak to not just the people doing work on accessibility, but to speak to those with a first-hand experience of living with accessibility needs.
Over email, we interview Aidan Matear, a 25-year-old writer with a first class honours in Creative Writing from the University of Bolton. Aidan lets us in on his lived experience with his disability, and dealing with reduced access to support in this pandemic*.
Cheyenne Ritfeld: Can you tell us about the disability you live with and how this affects your day-to-day life?
Aidan Matear: I have quadriplegic cerebral palsy. I am profoundly physically disabled, unable to walk, sit or even move independently. I need 24/7 support with all aspects of personal care, including eating and drinking. This obviously limits what I can do. I am completely reliant on other people. I can drive a powered wheelchair so once I have been hoisted into the wheelchair I can move around. This is great in a flat environment but can be interesting when out and about. For example, not everywhere has a dropped kerb so sometimes I cannot get off a footpath and have to retrace my route, back to where I started. Where there are dropped kerbs, motorists often use these areas as a parking place so I either can’t get down or even get past the narrowed path.
Cheyenne Ritfeld: Has this changed for the better or the worse since the pandemic?
Aidan Matear: My disability hasn’t changed but my access to support has. I have always been very reliant on my parents but since the pandemic I am totally reliant on them. However, they cannot access any support for themselves or even on my behalf. As a family I feel we are more invisible than ever before!
Cheyenne Ritfeld: Why do you think accessibility is not where it should be? And what is missing from the conversation?
Aidan Matear: I think there is a disconnect between the people designing/providing the accessibility and the people who need to use it. Too many assumptions are made about what people actually need or are capable of doing.
Also, some of the work I have done with local councils, medical teams etc., seems to go nowhere. People talk, and talk, and talk. But not much sign of doing.
Also, often carers are not sufficiently skilled or interested in the accessibility side of things and are either unable or unwilling to get involved with setting up equipment etc. It generally isn’t difficult, but perceptions are hard to change.
Often the public expect that people with disabilities are unable to do things or don’t want to do things or go to places that everyone else does. Generally, this is untrue.
I think there is a lack of understanding of what life is really like for people with physical disabilities. In many ways rather than how it used to be with lots of people with disabilities living in a big institution, there are now lots of individuals living in their own tiny institutions – their houses. We are still hidden away, invisible in the main to the rest of society. People complain about the restrictions lockdown has placed on their lives, the fact that they can’t go to certain places, or see their family or friends. But that’s pretty much my normal life. I cannot physically get into other people’s houses. I cannot go to many pubs or restaurants because either they are not accessible at all, or space is extremely limited, or the accessible toilet isn’t actually accessible. (For example, if the door opens inwards you generally can’t close it once the wheelchair is in.)
Since the pandemic these issues have multiplied. Where space was limited before, now there is no chance of being able to socially distance in a power wheelchair. I love my food (and a glass of wine) but I eat slowly so if there is a time restriction on how long you can spend in a restaurant, then I can’t finish my meal.
Going forward I think there needs to be much more careful planning. Consider what is actually accessible, not what looks accessible on paper. Ask people with disabilities. Use their knowledge and experience.
Cheyenne Ritfeld: What do you really think can/will improve accessibility of products and services (online)?
Aidan Matear: I would like to say when people with disabilities are regarded as being as worthy of a good life well lived as people who do not have disabilities. However, I think it is more likely to happen when businesses really appreciate the value of the purple pound. Perhaps I am cynical but also I am realistic.
Cheyenne Ritfeld: Can you give us an example of when you were excluded due to lack of accessibility?
Aidan Matear: Most of my life? I went to mainstream school, but I had to fit in with what they normally did. So, I couldn’t go on school trips, (unless my mum drove me in our car behind the school coach). In primary school I wasn’t allowed to do PE so was often left alone in a classroom to read a book. When I said I couldn’t turn the page I was told to read the same page again.
I have actually been invited to meetings to discuss disability rights in venues that weren’t even accessible.
Cheyenne Ritfeld: And a terrific example of inclusion?
Aidan Matear: Sadly I can’t think of one.
Cheyenne Ritfeld: Where in the UK should we make improvements first? (Healthcare/public transport etc)
Aidan Matear: It shouldn’t be a choice. Everything should be accessible. This would actually make life easier for everyone.
In America and Japan I was able to access public transport quickly and efficiently. This isn’t just good for people using wheelchairs it is also good for anyone with restricted mobility and also for parents with prams. I can’t even get on a bus in my home town. And trains are impossible, unless big intercity trains (and you book far enough in advance). Having said that, the one time I took a train to London I was left in the carriage for over an hour because the ‘special assistance’ staff forgot to bring a ramp to allow me to get off.
Healthcare is currently very physically inaccessible. Tiny GP rooms, no hoists in surgeries and often not in hospitals or even at wheelchair clinics. My parents have had to lift me out of my wheelchair, onto a bed (sometimes the floor!) and then lift me back again. Usually now I don’t actually get examined because there are no hoisting facilities.
Also need to consider public car parks. Often they have a height restriction to stop vans getting in. However, most wheelchair accessible vehicles (WAVs) are the same height as vans so can’t get in either. The people who most need to park because they can’t get on public transport can’t get into the car parks.
Cheyenne Ritfeld: What do you use to more effectively communicate your needs with your friends, family and/or employers? Are there functionalities missing?
Aidan Matear: I communicate mostly via speech but because my speech is dysarthric I sometimes need to use alternative methods, especially for people who don’t know me. For familiar listeners often all I need to do is simply repeat myself or spell a word. For non-familiar people I also use AAC (alternative and assistive communication). My two favourite and most efficient ones at the moment are an app called Proloquo4text which I use on an iPad and also my Tobii Dynavox. With the Tobii Dynavox I can make video calls, email, use social media, deliver presentations etc. It is a fantastic piece of equipment. However, I do need someone to set it up, charge it, move it into place etc.
The main difficulty is people not having the patience to wait for me to complete a sentence. Or being embarrassed because they don’t understand what I have said so they pretend they do. This doesn’t help, at all.
Cheyenne Ritfeld: When would you really say that the world is accessible?
Aidan Matear: When people stop seeing me as vulnerable and start seeing me, and other people with disabilities, as valuable.
When the world is planned right.
If doors open automatically everyone benefits. I can get in, you don’t have to touch the door.
If supermarket aisles and pavements are wider we can all socially distance.
If trains and buses are accessible for wheelchairs then they are accessible for prams.
If people can work from home then so can I, with the right technology.
Only when we can all fulfil our potential will the world be accessible.
A few days later we get another email from Aidan:
“I have thought of a couple of other things about how having my particular disability (wheelchair bound) affects my life.
1. Getting tickets for shows or concerts. Have to ring a special phone number, can’t usually book through websites. Makes it more difficult to get tickets. If I do get a ticket it’s usually wheelchair plus one only. The venues do this as the carer ticket is often free. However, what if, like me, there are 3 people in the family? It also means you can only go with a carer, not with a group of friends.
2. Cinemas often only have a wheelchair space on the very front row. And this is usually off to the side, at the very end of the row. Often means you can’t see the whole screen.”
More than just one experience Aidan has shared shows a clear need for more patience and understanding from people engaging with people with disabilities, but also the room for improvement in areas ranging from education to healthcare. This only reiterates the added value of listening to people’s lived experience with disability, rather than simply empathising. It provides researchers with golden nuggets of information to create change. We must seize the opportunity to improve accessibility now and build better experiences for everyone in the future.
*= At the time of writing, we have just gotten into a second national lockdown.
You can read Aidan’s articles on his blog here.