download.jpgHello everyone. It is a pleasure to be here today and be a part of this event. Hopefully by raising awareness today we won’t need to make this event an annual one. Hopefully this event will make you rethink things and encourage you to be more inclusive of all people, no matter what they have. 


Today I will be talking about my personal experience of living with a chronic illness and a disability and to do that I will tell you about my chronic illness. 


My condition is called Familial Dysautonomaia (FD). FD is a rare genetic condition which is carried in the recessive gene of Ashkenazi Jews. It affects the autonomic and sensory nervous system and is a degenerative condition. The most striking symptoms of FD are reduced sensitivity to pain and temperature and the inability to produce tears. But FD is more than just “no pain and no tears,” it affects every major system of the body, causing severe respiratory, cardiovascular, orthopaedic, digestive, renal and vision problems. It affects me personally in a number of ways. I have bad circulation in my extremities and I am pretty numb to pain. I had scoliosis as a teenager and wore a back brace for three years. My walking has deteriorated over time and I now use a walking frame to get around. I am also in the process of buying a scooter. 


I know that in the scheme of things I am pretty lucky. Despite growing up with a chronic illness, my parents were determined for me to be integrated into the mainstream and because of that I strive for all people with a disability to be treated as equals and included. 


My parents sent me to mainstream primary and secondary schools. I attended after school activities, such as gymnastics, swimming and tennis. I even had an after-school job at a beauty salon. I was no different to my brother or to any of my peers in my parents’ eyes. My brother saw me as his annoying, little sister and never treated me with kid gloves. We fought, we laughed and we shared similar interests in tv shows. At the time I felt like I had a normal upbringing.


However, I realise now that I missed out on a lot of growing up when I was in school. I didn’t really go to parties or hung out with my peers on the weekends. I never had a relationship with any of the boys at school and only started dating in my early twenties. I spent most of my time on my own, reading books and watching movies. My love of movies helped me decide what I wanted to study after finishing Year 12.


I completed a Bachelor of Arts, majoring in cinema studies and creative writing, and a Bachelor of Social Work from the University of Melbourne. 


One of my placements for my Bachelor of Social Work was at Yooralla where I advocated for people with a disability, helping them apply for funding and housing. I supported people when they had to fight for better access and I counselled people when they were dealing with a crisis.  I was at Yooralla for six years and during that time, helping and meeting people with a disability, I finally began to accept myself as a woman with a disability.


I was at Yooralla when they supported the roll out of the NDIS, a ground breaking funding system enabling people to access services, supports, equipment and housing who had none of these things before. The NDIS has empowered so many people, along with myself. 


The NDIS has enabled me to be less dependent on my parents. It has enabled me to access more services, like occupational therapy and therapy and it has helped me create my apartment into a home with the help of personal support. I am finally feeling like my life is in order and I can enjoy it more.


Through my work - be it from supporting people with a disability, to advising service providers how to be more person centred to being a part of the major changes to  the disability sector and with the support of the NDIS - I have reached a point in my life where I accept myself as a woman with a disability. I have also reached a point in my life where I can educate the broader community of the importance of inclusion for people with a disability.