WHEN Clare Kennelly was diagnosed with a rare degenerative eye condition as a second year student at UCC in 1987, she was advised by a family member to “tell nobody because you’ll never get a job”.
Clare has recently set up inclusivecork.ie and aims to make Cork city the most inclusive city in the world, by increasing the number of people with disabilities working in meaningful jobs and creating supportive work environments.
She took the well-intentioned but misguided advice “from someone who loved me very much”, But not revealing her disability made life difficult for her. Clare has a condition called stargardt’s disease, a juvenile form of macular degeneration.
“I couldn’t see the board at lectures,” she recalls. “I knew there was something wrong. I got my eyes tested and discovered I had this very unusual syndrome for which there’s no cure. I was devastated. I was 19 at the time. I failed my exams and dropped out of college.
“I went to America where I did bartending, waitressing and a lot of partying. Then I spent two years in Spain, teaching English as a foreign language. I loved teaching.”
Clare, a 51-year-old mother-of-two, originally from Buttevant, came back to Cork and repeated second year.
“I got a job in the Long Valley, which put me through college. I worked four nights a week. After my degree, I went straight into the Higher Diploma in Education. I used magnifiers to help me see.
“I never looked for support. I was very negative around my disability and didn’t talk about it. Now I look back and realise I self-discriminated because I didn’t look for support.”
Wearing glasses for the condition is no good. “I have a bit of myopia so I wear glasses for that. But for my condition, they don’t help,” she explains.
Clare used to pretend she had forgotten her glasses when out with friends, looking at menus in restaurants. It was one of her coping mechanisms.
After completing her H.dip, she subbed as a teacher for a couple of years and ended up teaching Spanish and sociology at the Cork College of Commerce.
“I spent 18 years there and had a fantastic career.”
She also worked with the Cork Education and Training Board, specialising in disability awareness, equality and diversity in childcare and social studies. She organised international work placements for students.
At the College of Commerce, Clare used to “over-prepare” for her classes.
“I knew my materials off by heart because I didn’t want to be like Mr Magoo at the top of the class. I didn’t disclose my disability to the college for the first eight years. That was my decision. But eventually, I felt that as I was getting older, my eyesight was deteriorating and while I had grown up in the ‘normal world’, I was slowly moving into the disability world. Now, I’m more confident about myself but for many years, I wasn’t confident with my disability because we have a society that discriminates against disability.”
While there are support systems in place now for people with disabilities, such as the DSS (Disability Support Service) at UCC, Clare says “things have and haven’t changed”.
“ I started inclusivecork.ie because I want to let young people take ownership of their disability, let their employers know about it and get the support they need.
“I would say I probably damaged my mental health and put stress on myself, trying to pretend I was something I wasn’t. I made life very hard for myself. But that was my journey. I only disclosed when I was ready to disclose.”
Two years ago, Clare decided to take a career break.
“I was finding the teaching hard, even though I had disclosed and got equipment and lots of support at the College of Commerce. But there are so many elements to the job, some of which I found difficult.
“I was coming up to 50. I could be working for another 15 years and I wanted to be in a job where I could do it without asking for help. I was interested in being self-employed having been reared above a pub, the Crossroads in Buttevant, owned by my parents.”
While teaching at the College of Commerce, Clare says she had many students with disabilities, such as autism, dyslexia, hearing impairment and blindness. “It’s a very diverse college. The students get all the support they need. But when they go for work experience or a job, they find it difficult.”
From her own research, Clare says 50% of graduates with disabilities are unemployed.
“That could have been me. I kept my mouth shut and had a great career. But now I’m at a stage in my life where I can see the inequality that still exists. If I don’t say something, who the hell will say it? I’m a woman, a mother, a person with a disability. There’s lots of elements to my life. Disability is just one element of my life but it does add an extra layer.”
Inclusivecork.ie is a business, not a charity, Clare stresses. Her work includes disability awareness training, diversity and inclusion training, executive coaching in assistive technology, dispelling myths and stereotypes around disability, advocating for people with disabilities, and giving legal advice.
She wants to work with employers who wish to create inclusive and diverse workplace environments.
“People with disabilities represent 15%-20% of the population. They are diverse, creative, loyal and flexible.”
Clare recently worked for the Kingsley Hotel.
“They have said to me they want to be leaders in inclusion. I did training with staff there. I made up a workplace audit. They know their business but I know disability. I gave them information on policies, procedures, resources, recruitment and retention.
“I had everyone in the room, from the manager of the accommodation department, the food and beverage department, front desk staff, the concierge. We talked about diversity and disabilities including hearing impairments.
“The hotel is looking at possibly putting in a loop system. Public buildings and good retailers have it. It’s for people with a cochlear implant. The loop system means people can connect with it in a building and hear what people are saying. I’m trying to get it out there and I’d like to see large print menus also.”
Eyesight, says Clare, is different for everyone.
“In my training, I give people simulation glasses. I did it in the Kingsley Hotel and the Cork English World language school.
“My ten pairs of simulation glasses represent conditions including retinitis pigmentosa, macular degeneration and diabetic retinopathy. They are some of the main diseases.
“There are hundreds of eye conditions. There’s a spectrum in eyesight. In my case, it’s my central vision that is affected. We all see things differently.
“Wearing the simulation glasses really brought home to people what it’s like to have an eye condition.”
At the Kingsley Hotel, Clare organised a ‘perceptual lunch’ where the staff dined in the dark, wearing blindfolds.
“That really brought home the message to them as well.”
Clare points out that there are people running businesses that have a disability and don’t disclose this.
“Everyone is afraid to disclose. I’ve started to make a podcast, interviewing Stephen Ryan who has a marketing business and has brittle bone disease. I’m trying to say that we’re ordinary people.
“We’re not climbing Everest or running marathons. We’re just doing our jobs.
“Disability is just one element of us. We are running our own businesses and we want to tell younger people that they can do that too. There’s power in transparency.
“The more of us who are honest about who we really are, the better. There’s so much anxiety now. Half of it is people thinking they have to be something they’re not. I brought a lot of anxiety on myself because I was trying to cope.”
These days, Clare works from home. She uses a magnifier in her laptop and she has a lot of talk back features on her phone as well as a big button keyboard.
She is looking for people with disabilities who can talk about them.
“I’d like to find people who can tell their disability story in a way that’s accessible. They can be role models to younger people.”
Thanks to technology, Clare can participate more fully in society than ten or 20 years ago.
“Disability is part of being human, whether permanent or temporary with say a broken leg. That’s according to the World Health Organisation.”
Clare likes to mention Einstein’s observation that if we judge a fish by its ability to climb a tree, it will live its life thinking it’s stupid. What should be emphasised is people’s strengths and how they cope with disability.