Hey folks!
I'm Chris, back with my second ever Community Central blog - practice makes perfect!
It's Disability Pride Month, a time where we highlight how people with disabilities should feel empowered by their differences and take pride in them. It's about reflecting on how society sees disability and what we all can do to improve this.
Disability Pride Month
I'll be honest, I had no idea what Disability Pride Month was up until recently, even though I have been using a wheelchair since I was a child. I remember when I was younger, I wasn't exactly proud of my disability and focused on how limiting it could be. Over time though, I learned that any limitations there are don't have to limit how I live and that I can and should be proud of who I am.
So for those who just like me don't really know what Disability Pride Month is, let me give you a short overview on what it is and why it matters.
Celebrated in July each year, Disability Pride started in 1990 to commemorate the signing of the Americans with Disabilities Act (ADA) to protect the rights of people with disabilities. Since 2015 - the 25th anniversary of the ADA - Disability Pride Month has been a worldwide celebration of the disabled community.
When you think about it, it's not strange that it became a worldwide celebration, but it is kind of strange that it's not that well known. Most people will experience being disabled at some point in their lives, whether temporarily or permanently, or someone they know. According to the Centers for Disease Control and Prevention (CDC), 27% of the US population alone has some kind of disability — that's one in four people. In other words, disability pride and improving accessibility should matter to everyone, and yet, people with disabilities have been marginalized and misunderstood for generations.
To bring Disability Pride more into the public domain, Ann Magill, who is part of the disabled community herself, created the disability pride flag in 2019 and updated it in 2021 to make it more accessible. With the help of suggestions from the disabled community, the new flag became what it is now.
I Re-watched Inside Out
During my Wiki Representative team meeting a few weeks back, we were talking about Disability Pride, and we touched upon the Disney-Pixar movie Inside Out. I dared to say that I didn't like it when it came out in 2015. I just thought it was boring and so sad that I felt worse after watching it. This thing is now getting a sequel?
Let's just say that my opinion was deemed less than popular and I was told asked to rewatch it. So I did.
As I was watching the film, I started to reflect on my own emotions and how they related to my disability. What in my day-to-day life with my disability triggers these emotions? How do I and other people with disabilities handle those? What can you do to help? Hopefully this will be useful for you!
The Emotions
Anger
I've heard people say that being in a wheelchair must be great - I get a disabled parking space, I get to sit back and chill, and I even get to race down hills! But also picture being outside in rain and the electric doors being broken to a café. Someone else parked in a disabled parking space who shouldn't be. A lecture at university being upstairs and the lift (elevator) being broken.
As much as I try to stay calm, it's hard not to let any frustration build and build and build. I think about what I'm missing out on, how preventable the issue is, and somehow angry at myself for feeling that way. I then feel guilty if I take it out on someone even though it's not their fault. They themselves often then feel guilty for not being able to resolve it and all of a sudden both sets of emotions are fighting in both our heads!
It's impossible not to get frustrated at accessibility problems and it's important everyone recognises that, including me. That frustration is an important outlet for things to change if that energy is channeled properly. I remember a time at university where a friend said he'd learned more about how inaccessible the campus was in three hours with me than in his entire seven years there. We took massive detours to get to seminars, got soaking wet waiting for taxis, and found a wheelchair wouldn't fit in a 100 year old corridor.
He got an idea of the frustration I experienced from this and used it for change. He became an advocate for me, adding that extra voice as an ally I really appreciated. He was proactive in getting as many of these issues addressed as possible and worked with the appropriate people to support me. Because of that, things began to change for the better for me and for other people with disabilities. That's the key - using that energy for positive change.
Sadness
It's very draining sometimes for me and other disabled people to constantly have to battle. Whether it be the extra length of time it takes us to do certain things and the extra hoops we may have to go through to get ourselves from A to B.
You can run out of energy to be angry or frustrated. Feeling fed up can take over, especially in the evenings as you reflect on what's happened that day. Irrational and unhelpful thoughts then come in to your mind:
- I'm better off staying at home
- My disability is annoying other people
- I'm being a hassle
Now straight off the bat, I know those thoughts are normal but at the same time it's important to confront them. While they can feel very controlling after a bad day, it's important to know that disability doesn't have to stop you living life. I've struggled a lot with this concept over the years - let myself be held back. But more and more am I opening myself up to trying new things and just seeing what's out there.
The key to this is forming the right connections. There are lots of people out there waiting to meet you. I've often felt discouraged about going out with others for fear of being a burden. But I'm realising more that people want to help me for who I am and they're my friends for who I am. It's nothing to feel guilty about.
For allies reading this, it's so important to value disabled people for who they are and to make sure they know that when times are tough. Make sure they know they have a lot to offer. I have an incredible group of friends around me who've picked me up when I've been down and I know not every disabled person has that.
Reach out to friends and family and know you are valued, even if it feels like that tall kerb disagrees with you.
Fear
Into the Unknown is the best Disney song (nope, won't be disputing that today).
I've been quite scared in the past about the unknown. What's to come for me? Just so many variables to consider. Will my body be the same in 10 years time? What if this new job won't suit my disability? Okay a big trip is coming up, what will go wrong?
Fear, worry, anxiety - those are quite common among disabled people. It's no wonder that adults with disabilities experience mental health distress almost five times more often than adults without disabilities. Read the Centers for Disease Control and Prevention article about disabilities and mental health.
All the worries going round your head, on top of the day-to-day thoughts like "This person hasn't replied to me, did I upset them?" or "OMG A SPIDER" (yep, legit scared of spiders). It's very tiring! As much as I try to stay resilient, I have bad days where it gets to me. This is normal though and it's important to be aware of it and don't panic as that's also exhausting.
What's helped me in the last few years (well, the pandemic gave everyone a long time to think) is to keep in the present. Taking it one day at a time and for many disabilities, you can't control how it will affect you in the future. So if you can't control it, try not to think about it. A wise person once told me that 95% of worries don't turn out nearly as bad as you think.
Disgust
I've experienced a lot of disgust at some people's attitude towards accessibility. Some see making accessibility adjustments as an extra obstacle, rather than a way of opening up experiences to more people.
I've seen first hand the eye rolls or flippant attitudes of people who don't want to make documents accessible for others I know for example. The issue is, it is usually more a systemic issue than that of a single person and accessibility should be more at the forefront of thinking.
Now, I'm not a massive gamer - I don't have the patience - but while I was preparing to write this blog, I came across some great advancements in gaming accessibility that weren't really promoted much when I was younger. Xbox and Playstation are making accessible gaming peripherals available (some of which on the pricey side, but I digress) which opens the door to a whole new experience for many people with disabilities. I know game developers too are making advancements in their visual, audio, and gameplay departments to allow for a customisable experience for as many people as possible.
- Read more about Xbox's celebrations of Disability Pride Month
- Read more about Playstation's accessible controller
A long way to go, but I'm very happy to see big players in the gaming industry making systemic changes that make accessibility more front and center.
Joy
It's hard not to underestimate how happy I feel sometimes when I'm able to do something I never thought I'd be able to do.
I'm from the UK and have had a couple of trips to the US in the past year. I needed a lot of convincing to go the first time last year as I was worried about everything that could go wrong, all the hurdles.
It was some close friends and my amazing parents who took the time to sit down with me and go through how the trip could work, step-by-step. As we examined the details, I knew the trip would be difficult to organise but was actually very achievable.
So I went on the trip and - bar some hiccups - had an amazing experience. I felt part of the group and involved in everything. Importantly, once I got into it, I realised I had a lot to contribute and this is an opportunity I didn't want to pass up.
What allowed this to happen? Thoughtful friends and my parents who worked with me to organise the trip. An inclusive environment where I could express myself. Me opening my mind and taking a leap to see what happens. This reminds me of a favourite Golden Girls quote of mine by Dorothy Zbornak:
This has been a new attitude for me in recent years and the number of new experiences has grown for me exponentially. It's brought me joy in knowing the things I can do but never thought were possible before.
Disability Pride
A key message in Inside Out is that all the emotions are important for everyone. As much as Joy wanted to sideline Sadness, she realised that it was Riley's sadness that brought her family closer to her. We can't just 'turn off' our emotions, as that's not how it works, and we shouldn't, as our emotions and personality form who we are. What we can do is try to manage those emotions and the difficulties we experience.
What's really helped me process these emotions is meeting people, getting myself out there. Those who know me will see I've struggled with that in the past, but recently this has really helped me process my disability and what it means for me as well as my emotions.
And that's just what Disability Pride is about - I can be myself and don't have to hide my disability or emotions around others. Thinking of the personality islands in my head makes me proud of my disability. Despite how my disability makes me feel sometimes, those experiences form a huge part of my islands and help shape me. They empower me to get myself out there and make a difference.
I have a lot of work to do still, but I'm on the right track and Disability Pride plays a huge role in that.
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