Did you know it was International Day of Disabled Persons yesterday?
A day to honour all those people across the globe who have a disability. Who have either been born with a disability or have developed a disability throughout their life and a day to promote the importance of equal opportunity for people with disability across the globe.
As a person with a disability I can attest to the fact that living with a disability is something you definitely have to get used to… and in fact I’m not sure you ever fully accept it. Whilst, it could be different for a person with a permanent disability I have not fully accepted that for the rest of my life I will be dependent on mobility aids whenever I develop an ulcer. You see, I was born with a rare condition called Livedoid Vasculopathy and essentially, I was born with varicose veins and develop chronic venous ulcers on my legs sporadically. Something a lot of elderly people people get, you might even know of them as bed soars but mine are a lot worse and due to being born with varicose veins it means the blood doesn’t get circulated properly back to my heart, which makes it difficult for my ulcers to heal. Whenever I develop an ulcer I need mobility aids to alleviate the pressure off my legs to promote healing and to help with the pain.
I still to this day avoid getting back onto mobility aids… and I don’t accept that I will be like this for the rest of my life. I’m a fighter and I still hope that one day I will just stop getting ulcers… I know.. I know I’m probably a dreamer but anything is possible right?!
Plus, I can’t accept not being able to do things completely for myself… I hate it. Unless if you have a disability you will never understand just how debilitating it is!
In fact, now the starting of an ulcer triggers anxiety for me because the idea of being dependent on crutches to get around… to having to use these 3rd party legs that are unreliable (I’ve fallen off them many times), that hurt the hands to use, that you need good upper arm strength to use (I can probably only use them for 15 mins without needing a break) and that generally just feel uncomfortable is scary….plus I’m more isolated during this time because it’s harder to get out (and for an extrovert this can be hard to cope with). I cannot accept that sometimes I’m simply not free to do my own thing, and get up and and do whatever I want whenever I want… I mean no one would choose this way of living for themselves.
Something that has helped me feel more comfortable in owning my disability is working for some very caring disability organisations. Organisations that are deeply passionate about creating greater accessibility for people with disability, understand that living with a disability is so unreliable (I can never usually commit to going away until 2 weeks out from leaving because I never know when my condition might flare up), that give me the opportunity to share my experiences of living with a disability through their brand and through working for these organisations I get to understand what it’s like for other’s in Melbourne living with a disability which increases my passion to fight for equal opportunity.
One of these organisations is Wheelaway. I’m just so incredibly proud to work for Di and Paul, as not only do they have a son with short stature, so they have lived experience, but they make me feel comfortable to take on ownership in my role in their business. Through their wheelchair accessible vehicle hire company they have come to understand just how isolating and inaccessible Melbourne is. They work at some major events in Melbourne (including the Motogp, Spring Racing Carnival, Australian Open and F1) whereby they move people with disability around the event’s tracks with accessible buggies and vans. Before they started doing this, these events were not accessible for people with disabilities and a lot of public event’s and festivals still aren’t.
I also just started working for Mobility in Motion, and whilst my relationship with them is quite new I can already see how much Ben cares for his clients by selling and fixing mobility aids for those in the community with a disability!
Now, I’m not writing anything of this to make you feel sorry for me, but simply because I seek to bring awareness to the experience of those living with a disability. To increase understanding in the community… so together we can understand where there is a lack of opportunity so we can altogether come to create greater accessibility and opportunity.
If you have any contacts or organisations I can partner with to create greater accessibility please do not hesitate to contact me at email@example.com or contact Wheelaway here and Mobility in Motion here.
This is a photo of me travelling overseas with an ulcer. I remember being in a lot of pain and having no support, as this was before the NDIS. Every time I’ve been overseas I’ve ended up back on ulcers since I’m usually walking more and because of the stress of flying. I’m hoping since I have more money for support workers and a greater understanding around what triggers my ulcers, next time I go overseas, I won’t get an ulcer 🤞🤞
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