Grace Bruen is 30-years-old. She is warm, charming, and has impeccable manners. She would love to work with people where her personality would be allowed to shine and where she could contribute to society and feel fulfilled. Instead, she sits at home.
Her mother, Phyl Kennedy, says her only child is condemned to a life of isolation and segregation because she has Down syndrome. "When she was born, I thought the syndrome meant she had an extra chromosome. What I didn't know was that the one 'extra' chromosome would lead to a life of isolation and segregation."
Grace, whose father is the crime novelist Ken Bruen, attended mainstream primary and secondary school and completed her Junior and Leaving Certificate. "But when her school years were over, what was waiting for her, was ....nothing," says her mother.
Ms Kennedy, who lives in Waterlane in Bohermore, is calling for education programmes, which are tailored to suit individual levels of ability, to be put in place to allow children with different needs develop their full potential. She says these programmes should monitor their progress right through primary and secondary school and beyond. She believes her daughter and other young people in the same situation, are on the "road to nowhere" after they complete their second level education.
"Some attend training centres, others are at home all day without a chance of a job or opportunity. I see a 30-year-old girl [Grace] with an extra chromosome who is severely punished and segregated because of it. Certainly, there is no outrage, no protest, why aren't the charities out on the streets? [highlighting the situation]. You daren't segregate anyone yet nobody is apologising for segregating my daughter. When we are all so 'woke', why is that all right?
"It [the education system] knows that people with intellectual disabilities are emerging from school, they should be interviewed about what they are interested in and able for. I feel there's no chance, no opportunity that would lead to a life.
"Grace went to the Mercy school [in Newtownsmyth] and that was great. It's when you leave school that you are off the cliff, that you are on your own. There is nobody waiting to receive these children after they leave school. You are integrated at school but you are on the way to segregation [when you leave]. The world should be ready for them and companies and industry should see what these people are good at. That's where the advocacy should start. Not at the end of the race. It's not sympathy these children need, it's a place in the world. The segregation of these young people is not talked about as a scandal. There is no outrage, nor does the injustice have a face of disgrace for the TV news. [The late] Brigid McCole was the ‘face’ of the Hepatitis C scandal, Maurice McCabe was the Garda whistleblower, Catherine Corless is the face of the Tuam Babies, Vicky Phelan refused to keep the cervical cancer [scandal] a secret, Shane Corr is now blowing the whistle on nursing home charges. This latest scandal doesn't yet have a face.
Talking point
"Everything today is about inclusion and integration so why is Grace sitting at home? Since she has left school, she has never seen one friend. She doesn't have any friends. My friends are her friends. If she had a job, it would give her a life. In other countries, for example, Italy, they are obliged to have a person with a disability employed. Mostly, they get paid work. Here it [the issue] is not even a talking point. It is horrendous to see what a fabulous girl she is but people just look at her features. What's wrong with her features? She's just different, she's a good looking girl."
Phyl believes her daughter is being robbed of a future and an opportunity for self-development. Grace worked as a volunteer for six years at an after school study group in Bohermore. She loved the position and enjoyed working with the children. "Unfortunately, lockdown shut that down. There are other places Grace could work, such as in the hospital [UHG]. She would be an asset. She could tell you where endoscopy is, she could be a greeter. She would be great at the front desk of the Council [office].
She says it is important that society stops talking about mainstream schools and integration when this is a road to "ultimate segregation". "Is Grace a child of a lesser God? Yes, she is different, yes, she does have an intellectual disability. Down syndrome is a very visible disability. Grace's mental capacity is decided by her features. It enrages me. In an age, when a child can decide/change their gender, she can't get a job. There is no future [for her]. Who is advocating for this indigenous group - people with an intellectual disability - and why are we looking at the differences, not the similarities? If all of us are different, is Grace twice as different as everyone else? I never saw discrimination until I had Grace and I never saw it in Bohermore."
Phyl grew up there, in a close-knit community which looked for "similarities, not the differences" in people, she says. "We always had a mix, nobody was segregated. When we had a boy who was deaf/mute playing soccer on the street, people would say: 'Sure, you're not blind'. There is no segregation in Bohermore, it is foreign to me and makes me furious. Should I be glad that Grace is not down at the Spanish Arch, drinking bottles of vodka, vomiting, and going home in an ambulance? Should I be relieved that at 30 she hasn't slept with 15 guys, four of them beating her? Is Grace a blessing in disguise; am I supposed to see it that way? But how I see it, doesn't matter."
Ms Kennedy has long campaigned for people with disabilities to be given better services and opportunities. It's not sympathy these children need, it's a place in the world, she says. "Everyone is going to college. Some drop out, they have that privilege. Grace is not allowed to be a layabout." Phyl first spoke to this newspaper 28 years ago when Grace was aged two. There has been no improvement in terms of service provision since, she believes. "It's worse now, there are less services."
She says parents are tired campaigning. "They usually have other children and are tired. They are also terrified to open their mouths because they fear that the services will be withdrawn. For 28 years, I've had written and face-to-face fights with politicians. I lost my health and achieved nothing for my daughter. I can't even look into tomorrow. I've had serious illness. I'm 75 and I've had a mastectomy and a bowel removal. Last year, I went to a doctor for antibiotics and I [discovered] I had a huge clot in my lung and ended up in hospital. This is my last interview, my final word on it. I'm tired."
