Advocacy. I cannot stress how important this word is to me. I’ve been an advocate since I was six years old, I’m almost fifty and that’s a long time to stand up for my rights. It shouldn’t have to be this hard to obtain equal rights like everyone else. I’m in constant warrior mode, every single day. And It’s freaking exhausting.
Some days, it’s dealing with a stubborn or ignorant receptionist at a doctor’s office who refuses to email or text my appointments even though the Ontario Human Rights code and the College of Physician and Surgeons of Ontario states very clearly that I have the right to use email for communication purposes. Seriously?! I’m dealing with one of them right now who wants to MAIL me my appointment times. And this is the cancellation list! They are giving the patients who can use the phone priority and this is not okay. Not by a long shot. After arguing with them for weeks, I finally had enough and requested help from a trusted source who graciously offered their assistance in this regard. Ironically, it’s the same organization that my mother set up for people like me.
Other times, I’m dealing with the hospital, particularly the ER with their communication issues and attitude towards patients who are deaf or hard of hearing. As a patient who’s in constant spinal pain, I’m already fatigued which makes my ability to listen drop significantly. Add the high pitched alarms around me, super loud nurses who scream at patients next to me and drugs that make me groggy, it turns into a nightmarish experience that often leads to me crying when I leave. I really struggle being in the hospital, especially due to the staff that are not aware of my limitations or disabilities in general. I recently had to go toe to toe with two separate departments and threaten legal action since they were not taking my complaints seriously enough. It wasn’t until they met me face to face that they realized the true extent of the way I’ve been treated and that it wasn’t right, legally nor professionally. I find the fact that I have to do this almost after every visit is truly disturbing. It’s a strong sign that the medical system here is broken and that the medical staff is not being fully educated about the rights of disabled patients.
On top of that, I’m dealing with the movie theatres for not providing proper captioning, especially when the equipment fails. I recently saw the movie Frozen 2 and absolutely loved the beautiful animation. However, the device kept dropping every other sentence so I missed a lot of dialogue. When I confronted the manager about it, she waved it away as a minor inconvenience and claimed that it was “a common issue and not to worry about it”. I was furious and followed up with a letter of complaint to them afterwards. Their response was to give me a free ticket. Did that solve the issue? Nope. Sigh.
Then I recently saw a post from a prominent hearing loss company that made me incensed. In it was a photo of a toddler wearing hearing aids along with a note stating that she will learn to have grit, advocate for herself and be a strong woman. Um, no, forcing a child to endure that on their own is not at all responsible nor appropriate. And it’s abundantly clear that they didn’t think this through nor understood it from her point of view. Yes, it’s okay to be strong and stand up for yourself. Absolutely! But to automatically assume that she will be capable of doing it alone was entirely out of line. She will need love and support, especially from her family. Letting her be an advocate on her own is NOT okay and can set up her up for potential failure or create self destructive patterns. Yes, she can speak up for herself as long as she has support from her family, teachers, doctors and counsellors. Yes, she can become a strong person as long as it comes from a place of positivity and not ignorance. She will need a team of professionals to help her navigate through a world that is not accessible to people like us.
Every. Single. Day. I face a situation that prevents me from being a part of the society like everyone else. Yes, it is deeply unfair. But what disturbs me more is the lack of help I’ve requested from various sources that I thought would back me up. One of them is the government, ironically, who told me that I have to “advocate” on my own. I was literally speechless.
I’m tired of this crap, so tired. Even though I don’t mind speaking up, I just wish more people with disabilities pitched in too. There is a huge portion of the population that chooses NOT to say anything or do anything to remove the barriers that still exists. This puts an enormous pressure on me to continue educating others about accessibility and fairness. That’s not okay. It’s taking a toll on me, mentally, emotionally and physically. I’ll tell you this: being an advocate for over forty years has made me feel very alone and utterly exhausted.
Please do not be one of those people who consciously makes the decision NOT to speak up. It makes my job a LOT harder to advocate for my rights as well as everyone else's. It's not fair to me or others to ignore issues, especially when it comes to creating an accessible society. Believe it or not, I’m super shy and suffer from anxiety due to my severe spinal pain, so I have to force myself to speak to every single one of those people on a regular basis to remove the barriers. I’m actually legally deaf and find it extremely difficult to talk to people face to face, and yet I still do it.
Speaking of Frozen, I found my theme song! It’s “Into the Unknown” by Panic! At the Disco. And it’s closed captioned!!!! By the way, the singer, Brandon Urie, was bullied in school for singing Disney songs which makes this song even more special. He is also an LGBT icon and pansexual, how cool is that? “Into the Unknown” is a perfect reflection of my life since it’s about finding the strength to overcome obstacles with incredible determination, just like Elsa. The score is brilliant, and it’s especially appealing to those with a disability. It’s amazingly inspiring! I can relate to Elsa since I’m like her in many aspects and willing to face adversity with unwavering spunk and courage.
Since it’s the holidays, I do have a request. I am very fortunate to have a place to live and surrounded by people that I can count on here. However, there are a lot of others who are truly alone or struggling to get a hot drink or food, especially on a bitterly cold day. I’m a strong believer in being kind and paying it forward, please share your kindness and generosity with others if you can. A great example is buying a cup or meal at Tim Horton’s for the next person in line behind you or at the drive through. Why do I do this? Simple. That homeless person you often see on the streets could easily be me. Many of them have disabilities, some of them are physical, others it’s a mental health issue which is not their fault. A lot of people are quick to judge them or make the assumption that the government will pay for their equipment such as wheelchairs or housing. It’s not that simple nor is it true. The funds are very limited and it’s usually the cheapest option which is not up to today’s high cost of living. They are victims of a broken system which is incredibly dehumanizing. So, please help others if you can. A little bit can go a long ways for them. Thank you!
I can hear you but I won't
Some look for trouble while others don't
There's a thousand reasons I should go about my day
And ignore your whispers which I wish would go away, oh
You're not a voice, you're just a ringing in my ear
And if I heard you, which I don't, I'm spoken for I fear
Everyone I've ever loved is here within these walls
I'm sorry, secret siren, but I'm blocking out your calls
I've had my adventure, I don't need something new
I'm afraid of what I'm risking if I follow you
Into the unknown
Into the unknown
Into the unknown
What do you want? 'Cause you've been keeping me awake
Are you here to distract me so I make a big mistake?
Or are you someone out there who's a little bit like me?
Who knows deep down I'm not where I'm meant to be?
Every day's a little harder as I feel your power grow
Don't you know there's part of me that longs to go
Into the unknown?
Into the unknown
Into the unknown
Are you out there?
Do you know me?
Can you feel me?
Can you show me?
Where are you going? Don't leave me alone
How do I follow you
Into the unknown?
Tags: christmas holiday deaf frozen theatres captioning advocacy