Julie Helen: ‘At my core, I am Julie who has been shaped by the people around me’

Happy Disability Pride Month! July is Disability Pride Month to celebrate the diversity disability brings. It originated in the USA in 1990 when disabled people marched on Capitol Hill to ensure the American Disability Act came into being. Many advocates across the disability sector in Ireland wish each other “Happy Pride”.

I have a weird queasy feeling in my stomach about it, like, a deep uneasiness. I am not proud of how Ireland treats disability, we are in a “fight” culture.

Let’s start at the beginning of my story. I am extremely proud of who I am. I am proud of my family name and reputation, I am proud of the family name I married into. I am proud of the person I am. I am proud of my integrity, my determination, my grit, my sense of humour, sense of fun, work ethic, and the kind of daughter, sister, wife, mother and friend that I try to be. I am not any extra proud because I have cerebral palsy; the barriers in society doesn’t allow that kind of pride to bloom within me.

I spent many years trying to make people see me as a person before cerebral palsy. I strived tirelessly to be the same as everyone else in school and college, and later in work. 

The need to acknowledge my disability in any of those settings made things harder and fed into to a story of being “great” for doing the most ordinary things. 

For a long time I was “a person with a disability”. We call that person first language. Then over the years, a shift came where we talk about disability being a social construct, that society and the world not being set up in the right way disables me more than any actual medical condition. Disability isn’t just medical, but social too, and we are encouraged as advocates to call ourselves “disabled people”.

It took me a long time to be able to get as far as saying I am a disabled person or a disabled mother. I end up using both disabled person and person with a disability. Disability services definitely still refer to disability in a medical way. As I say, there’s room for both. No matter what way we refer to my needs, I am still Julie.

At my core, I am the Julie who has been shaped by the people whose shoulders I sat on; quite literally the shoulders of my Dad until I was about six, and figuratively by Mum and my brothers and grandparents, family and friends- every person who ever believed in me and there have been and continue to be so many.

 As I write this, I can feel tears sting my eyes because, as I get older the quest for equity of access remains. There is a voice in my head that continually says; ‘Are we not there yet’.

We have made many strides over the years, but we have legislation sitting on shelves not working; the Disability Act (2005) feels like it is under review forever. Too many children still don’t have appropriate school places. Too many adults with intellectual disabilities are living in institutions. Elderly parents have to mount campaigns called “before we die” to get support for their loved ones. Young people live in nursing homes because care packages are expensive. We seem to be in the same place. Fighting for the same things.

I am lucky, but until all these things are acted upon, and many other little constant fights, it’s really hard to be as proud as I should be, because disability is much bigger than just me.