Lately I’ve been wondering about whether I am disabled and wondering how anyone knows if anyone else is disabled. My wondering has always been there, but the full-on pondering started when a couple of people recently questioned my ability to understand and represent disabled people in relation to digital accessibility, or people with disabilities depending on how you prefer to be referred. As a digital accessibility consultant, I often wonder about these things.
In the past I put my business motivation down to all the people I know who are disabled. People I love have Dyslexia, low vision, Autistic Spectrum Disorder, Diabetes, Asthma, mental health issues, mobility issues, anxiety, PTSD and hearing loss, among other things. But maybe I also have an underlying disability of my own that I haven’t disclosed publicly or accepted personally.
Because of my mahi / work, on several occasions I’ve been asked if I’m disabled. Other times people suggest that if I’m not disabled how can I know and understand their situation. There seems to be an assumption that if I haven’t publicly declared my disability status then I must be ‘able.’ This upsets me as I believe I am incredibly good at my job, as are the rest of the Access Advisors team, and we all have a reasonable level of understanding having worked in this space for 20 years plus. But the question, or implication, also upsets me because I wonder if my, or anyone else’s, disability status is anyone else’s business?
At these times I wonder how anyone knows whether someone is or isn’t disabled or is or isn’t just very unhealthy and experiencing problems daily which cause them issues with access, and mobility, and life. Many people I love and work with have actual quantified and certified disabilities that they don’t officially announce, but it doesn’t make them any less disabled.
I am fairly certain that wearing a mask and struggling to breathe because of my chronic asthma is a big part of me thinking that I might be disabled. Seeing the faces of my concerned whānau / family as I cough because I can’t breathe behind a mask that is designed to keep me and others safe, is heart breaking and thought provoking. Seeing my young daughter terrified because I’ve pulled the car over and I can’t talk to her because I’m struggling to get a breath because of my asthma is terrifying for her, and for me.
Recently, when my doctor expressed concern that my oxygen levels with my mask on were significantly lower than normal (sats were at 90%), I realised that my situation isn’t ‘normal.’ Just taking the mask off made an enormous difference for me personally (sats increased to 97%), but only because I have such low lung capacity. For most people wearing a mask is annoying but it doesn’t compromise their breathing. For me it reduces my oxygen levels severely which makes it a struggle to breathe and walk and think.
When the media talks about who is most vulnerable to covid, I wonder. As far as vulnerability to covid goes, I’m up there. A chronic respiratory illness, an auto-immune disease, being on numerous medications and being over 50, all add up to making me very vulnerable to covid. They also reduce my mobility and cause pain and cognitive impairment. Reduced oxygen often makes me hypoxic, and some medications make me ‘spacey’ and make it hard to focus and make decisions. And I’m not the only one with ‘issues’ that disable me that aren’t visible and obvious.
Pre-covid, when onsite with clients they often suggest we walk up a flight of stairs or two to get to meeting rooms. When this happens, I have a suspicion I am disabled. At times like this I carefully weigh up two embarrassing choices. First, I consider if it is more embarrassing to say I can’t walk up a set of stairs, have to explain why and then find an alternative. Then I consider if it is more embarrassing to struggle up the stairs and then be puffing and panting and sweating at the top because of my asthma. When my joints are bad it’s not just the breathing it’s also the pain that makes it difficult to walk anywhere. The elevators always seem so far away from the stairs. Many others struggle and don’t say anything.
When friends used to ask me if I’d like to go for a walk, I wondered. Most of the time I’d say no or if I do go for a walk, I walk at a snail’s pace and feel embarrassed. Sometimes it is because of my asthma, sometimes it is because my joints ache so badly that each step is like walking on broken glass, sometimes it’s because I’ve broken or injured something, again. Friends have just stopped asking me to join them for walks.
When my dad applied for a mobility pass after his ankle surgery, I wondered if I would qualify too. Throughout my life I’ve thought about the quickest way to get somewhere that doesn’t involve stairs or walking a long distance. I used to do it without thinking. Now I realise I avoided many places and activities because I couldn’t get there easily. There are many other people who struggle with stairs and walking long distance who don’t have a mobility pass.
Once when I was in hospital, overseas, for eight days, with chronic asthma, the doctors asked me if I thought it was safe wandering around third world countries on my own, I wondered. Their concern and questions made me stop and think about my safety, but not any disability. And it wasn’t going to stop me. I just got better at doing research on where the medical facilities were and remembering to bring medication, most of the time.
When I went for my covid vaccinations, I wondered. I am double vaxxed, but to get there I had to come off one of my key medications for two weeks each time, compromising my health to protect my health. Also, I’ve had allergic reactions to vaccinations before so the stress of getting the vaccine was significant and I delayed for months. So, what about all the other people with allergies to vaccines, we need to consider them too even if they don’t call it out.
Once, when I ended up in hospital late at night with an allergic reaction to a ‘natural fruit drink,’ I wondered. No amount of domestic antihistamine was bringing down the rash, so I headed to hospital. There was also the time I found out I was allergic to ibuprofen, on a train, in the underground, in London, at rush hour, on my way to work, and then I woke up in an ambulance. And there was also the adrenaline shot I needed when I hugged a police horse after a rugby game and went into anaphylaxis. Probably not a disability but disabling none-the-less, and maybe a good reason to carry an epi-pen.
Whenever I fill in forms that ask for medical history or medications, I wonder. The forms never have enough space for the all the recent injuries, hospitalisations, anaesthetics, medications, conditions. When I see the signs by elevators encouraging you to walk up or down, I feel embarrassed, and I wonder. When I take a taxi 2km because walking that far seems like a marathon, I wonder. When I get a prescription exemption card before June, I wonder. When I can’t bounce on the trampoline with my kids, I wonder.
When I’m at an outdoor wedding and everyone except the family are standing and I desperately need to sit because of the pain in my ankles, I wonder. When I broke my wrist, I knew it was only temporary, but I still wondered. I wondered about the fact that I have so many photos of me on crutches, in plaster casts, with stitches, with neck braces or wrist braces. When I had four broken bones from four separate accidents all at once, I wondered.
I am almost certain that I am not the only one who has stories like these, and I’ve shared my story to stimulate discussion rather than anything else. I want to raise the bar and get us thinking about doing the right thing for everyone whether they have visible or declared disabilities or not. And I’m still not sure if I am disabled or just medically messed up. But I know there are many limitations in my life that impact on my quality of life, issues for my whānau / family that have an impact which all make me highly aware of SOME of the issues people with disabilities face. Hopefully, that qualifies me sufficiently for my job.
No one can intimately understand any disability other than what they personally experience. But when you are raised by, live with, or work with people with disability you will learn a lot if you listen and observe. If you are surrounded by many different needs, then hopefully you can speak to the full range of impairment in a way that someone in a wheelchair may not understand blindness or cognitive impairment.
At Access Advisors none of us are THE authority on anything. Even with our personal lived experience, our whānau / family, and our mahi /work with a variety of people, we don’t speak for any specific group. But we do speak up for all people, about digital accessibility standards, and empathy, and accessibility for Aotearoa – New Zealand. Our team includes people with multiple medical conditions including Diabetes, a blind consultant who informs all our practice, another who retired with joint injuries from military service, and me. We may not shout about it, but we all have access needs.
What I am certain of is that no one knows what is happening for anyone else. There are so many people with severe or complicated health conditions, undiagnosed disabilities, people with invisible disabilities that they don’t want to share or declare, so many people with mental health issues or people just having a sucky time. The point is to try to remember that you don’t necessarily know what is happening for others. So, please always be kind and don’t make assumptions.