Living, Working, Experiencing Disability
When you are someone who experiences disability, there are many barriers that you face in your everyday life. There is a lot of people living with disability who want to help change the experience for those with disability.
To change that experience for others, we end up working in the disability field. I have been someone who has experienced disability since birth with blindness, but I also experience disability with ankylosing spondylitis. My disability progression has been a challenge but I, like many others, want to change the experience for others, and to do that I started working in the disability field about 10 years ago.
It started with advocacy
And now I work in a leadership role at a nonprofit serving the disability community. My work is my passion and that is a good thing to be able to say. It makes going to work everyday and overcoming the barriers of my blindness and AS so much more bearable.
There is a part to this that not many talk about and that is that being a person who experiences disability living it 24/7 and then working in disability field and breaking down barriers for others every single day can really take a toll on a person. You never get away from your disability and it can feel like you are nothing but your disability.
It sometimes can feel like you cannot escape it, overwhelming every aspect of your life
If you work outside of disability you have something else to focus on because during your work day, you are focused on that. Your disability is a small part of that day. But for me I live it every day 24/7 no escape because it is my work as well.
When this occurs I think it is important to take some steps for dealing with these feelings and taking care of your mental health.
I have been really working on this over the last 3 years and have developed some tips to share
Have hobbies and interests outside of disability
We are all passionate about creating change, advocating and making a difference. But your life cannot revolve around your disability. You have to find things that bring you joy and where your disability is not the front and center. For me, this is reading, writing, going for walks, participating in leadership webinars and courses. Focusing on the things that truly bring me joy outside of advocacy.
Let those feelings of frustration, sadness, anger, etc. happen
I have found that when I don’t take that time away from my disability and advocating I can get really down. When you are constantly fighting battles for yourself and others in similar situations it can take a toll on your emotional and mental health. I think it is important to be ok with feeling those feelings and acknowledge them.
Find people who understand and you can talk to
I have realized the power of talking to someone about those feelings and just getting them off my chest. I am not looking to change my situation or my work because I truly love it but I do need to have an outlet for that frustration.
Have fun, laugh, make a joke, don’t be so serious all the time
I find being able to laugh at my situation and sometimes even the barriers allows me to just look at it differently and deal with it. So for example, I went to a building and when I went to go to the washroom the Braille on the door under the word washroom actually said Braille signage in braille. It should have said Washroom like the print but it did not. I mean I was really confused at first and then asked someone if it was the bathroom and once they confirmed I laughed. I mean someone wasn’t paying attention. Or when I get lost, I just look at it as an adventure have a little laugh once I get myself out of the situation and move on.
There are things that won't work for everyone--it is just figuring out what works for you. But it is not sustainable to live, work, breathe disability and not have outlets. It is emotionally taxing and hard and we don’t talk about it enough and I think we need to start that conversation.
How much about your AS do you share with others?