International Day of People with Disability
On 21 November 2020, our founder and current President, Joanne McCormick was a finalist in the VisAbility (Ltd) Awards personal achievement category and we couldn't be prouder.
Prior to her nomination, Jo wrote the following blog contribution in celebration of International Day of People with Disability.
If you’re reading this blog you are likely familiar with March. If you’re not familiar with March, I encourage you to spend the month embracing yellow and raising awareness around endometriosis! Why? March is endometriosis awareness month which is an important month in the calendar for all EndoWArriors around the world.
Another important date highlighted in my calendar is International Day of People with Disability, which takes place on the 3rd of December each year. To celebrate this day, I wanted to contribute the following sentiments to Endometriosis Western Australia’s blog.
I grew up with two siblings who live with a genetic degenerative eye condition called retinitis pigmentosa (RP). My older sister who lives with RP is one of my heroes. I proudly look up to her and admire all that she has achieved. She has raised two beautiful children, regularly volunteers, she’s a giver, a go-getter and is one of those people I can call any hour of the day or night and can count on to be there for me. My sister has the most incredible smile and laugh. There are times when I feel grumpy and know if my sister was in the same position, she’d be laughing out loud. I’m also incredibly proud of my older brother who lives with RP.
Additionally, one of my best friends is the mother of a beautiful child who lives with a visual impairment. I often think of what his days are like, navigating school and social activities amongst so many active young friends. I’m in awe of his achievements and proud of my friend who is such an amazing mother and advocate for her son. I also live with endometriosis and was diagnosed with retinitis pigmentosa in my thirties. I would like people in a similar position to know they are not alone.
As the youngest of seven children and with perfect eyesight at the age of 21, I would go as far as to say being told at the age of 30, that I had inherited the genetic disorder I thought I had successfully avoided, contributed towards the foundation of our endometriosis support group. Simply because ‘alone’ was redefined. Finding myself stuck at home and no longer able to jump in my car and drive to wherever my heart desired was confronting. Connection and inclusivity are close to my heart and sometimes curveballs that seem like curses, are blessings in disguise. For example, living with endometriosis and retinitis pigmentosa and being told I was no longer able to drive a car meant I could no longer run errands and burn myself out. Having a condition that is a recognised disability means I have access to support services that are so very helpful. Being told "you can’t" is wonderful motivation towards "yes, I can" and I HAD to slow down. A luxury that some people who live with endometriosis don’t have.
One of the most surprising discoveries for me was the number of people in the endometriosis community who also live with a visual impairment and/or disability. Until I started asking questions and initiating conversations, I had no idea so many people in our community whom I so strongly admire live with a disability. These absolute champions continue to contribute, thrive and kick goals.
If you are reading this and live with an invisible illness, you are probably very familiar with the comment “but you don’t look sick.” I don’t really like using my cane (his name is Michael) and without him, others can struggle to recognise that I am visually impaired. Our team at EWA are incredibly aware and supportive by discreetly aiding navigation at events in order for me to avoid using Michael. Inclusivity is at the heart of what we do, and it’s lovely to be part of such a fantastic team.
You know the "why don’t you..." comments that us EndoWArriors just LOVE to hear? I get extra ones like "Why don’t you get a guide dog?", "Why don’t you gear down and live on disability?", "Why don’t you learn braille"? The list goes on. I guess people are curious. I’m not entirely blind, I’m visually impaired. Unlike many, at this stage in my RP journey, I’m fortunate enough to still be able to see my phone, read texts and emails. I have central eyesight. I’m sure I get a few odd looks when sitting in public places with Michael, catching up on texts and emails.
Last year, along with some of our board members, I attended a conference in Perth for Women’s health. After navigating to a table unaided and rather proud of my efforts to hide Michael, I settled in with our team as the room fell silent. One of my colleagues sat in discomfort, clearly in a world of pain, trying to get her flare under control.
Then it happened. You know those moments in life that affirm you’re on the right path? I remember staring up at the screen as one of the speakers was introduced. As I was trying to discreetly decipher what was on the screen, the speaker asked for forgiveness in advance in the event that she muddles up her slides. She disclosed that she was visually impaired and also doesn’t like to use her cane. My self-doubt, fear and apprehension instantly fell away. Suddenly I didn’t feel so alone and that little ‘you can’t’ voice in my head was silenced once again.
I’ve met so many INCREDIBLE people living with chronic illness and disabilities out there advocating, kicking goals, changing lives and making a difference. People who despite being faced with challenges, rise up and take life by the reins, living each and every day to the full and spend so much time giving back. These people are my heroes and really do inspire me to practise gratitude.
My hope is for a kind, patient and inclusive world where everyone is able to contribute. If 2020 has taught me anything it’s that accessibility, inclusivity and flexibility IS achievable. Several services that were out of reach for so many in 2019 are now accessible. Many people living with health challenges and/or disabilities have an option to work from home, creating new opportunities for career advancement and financial independence. The introduction of Telehealth services has been lifechanging for so many in the endometriosis community, not to mention access to on-line support group events and general online services like yoga classes and workshops. We are witnessing an accessibility revolution via digital technology and that is so exciting!
Let’s keep that momentum going. Let’s keep those important conversations flowing and let’s take some time today to celebrate the achievements of those who live with a disability. As a community, let's continue to create an inclusive society. We are making a difference!
- Joanne
Telehealth testimonials project in conjunction with WA Primary Health Alliance - WAPHA and ConnectGroups - Support Groups Association WA Inc. to raise awareness, educate and increase the use of Telehealth for those with diagnosed chronic conditions so that even after COVID-19, people with chronic conditions can access Telehealth.