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Dublin: 10 °C Tuesday 11 December, 2018
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'I was told I'd never write with a pen - and now I'm a teacher'

James Cawley talks about the challenges of Arthrogryposis Multiplex Congentia, and the importance of remaining positive.

James Cawley

I WAS TOLD I would never write with a pen – and now I’m a teacher.

I was born with a physical disability called Arthrogryposis Multiplex Congentia (AMC ) which affects my upper and lower limbs and spinal cord, meaning I have to use a wheelchair. I can use my hands and legs but they’re fixed in position, with almost no movement in my left hand.

Secondary to my disability, I also have scoliosis of the spine and osteoporosis from sitting down all the time which means I attend services such as physiotherapy.

I have a personal assistant (PA) who helps me with dressing, washing, cooking, cleaning, getting out of bed in the morning, really everything. I can’t imagine my life without a PA.

In terms of my role as a teacher, I would need a PA to help me get ready for work, to travel to school, organise lunch and basically act as my other hand.

Growing up with AMC

I started off in mainstream education in a small village called Drumlish in County Longford and was supported by the help of a Special Needs Assistant (SNA). My SNA was there with me every step of the way, right through primary and secondary school (Moyne CS) which was an invaluable support for me in my educational journey.

After doing the Leaving Certificate, I applied to Maynooth University through the Disability Access Route to Education (DARE) where I got a BA in Geography and Business.

University life was difficult for me at the beginning. I had to make a massive transition from moving away from the family home to taking on a degree, all while embarking on independent living with the support of personal assistants.

I was worried about trying to take on the course alongside the disability and worried about socialising. Was I going to be able to live the student life and later get full employment?

But after a brief “settling in” period, I mixed in well. I joined many clubs and societies and fully embraced student life.

I’d really recommend college/ university to anyone who gets the opportunity. It helped me develop vital skills as a person as I worked towards my goal of becoming a teacher.

In September, I’ll graduate with a First Class Honours in a Professional Masters of Education and I have just accepted my first teaching job.

Advocacy

I’ve also been advocating for people with a disability. Last week I met with Minister for Disability, Finian McGrath, at Leinster House and told him about the real-life daily challenges that face people with disabilities in Ireland today.

These include accessibility, transport, housing, investment into personal support/care and things like more individualised care budgets for people with disabilities, which in my case is more suitable for my lifestyle.

min for dis James with Minister Finian McGrath

I depended on PA support, but after finishing university this was suspended as I awaited a “decision from a HSE manager”. That was never really the case before. This all happened just as I got my holidays and during a time when I needed to attend job interviews.

I definitely think going to Leinster House was why my support was restored. A week after I met the Minister he said he’d made representations on my behalf. Today, after a month without support the Personal Assistant Support has been reinstated.

Disability shouldn’t hold you back

I think if we want to increase the percentage of disabled people in the labour force we need to break down the barriers for them. If we normalise disabled people in the workforce it increases the awareness of people’s ability and skills.

People with disabilities have a right to be supported. Without personal support for a month, I relied on family and friends to help me live my independent life. I had to contact the HSE, and met with a government minister – and subsequently got my PA support reinstated.Why do I have to keep fighting for these supports to be a contributing member of society?

Your disABILITY should not prevent you from life opportunities. I’m just home from an extraordinary adventure to South Africa where I gave talks on positive living to people, from township children to government ministers. It was a packed, moving, and emotional experience for me.

I got to dive with sharks, visit vineyards and even got to the top of Table Mountain.

My advice to anyone facing adversity is to focus on your abilities, have dreams and make them happen, be a strong advocate for yourself and ensure your needs are being fulfilled.

James Cawley is Secretary of the Arthrogryposis Association Ireland.

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