The special powers of my sister Mary Kate
WHEN I was young, I used to think my sister Mary Kate had special powers. A bizarre idea but I reasoned she must have something to account, compensate or make up for her "differentness".
The first time I realised Mary Kate was mentally handicapped was when we were at summer camp. Despite the fact that she was eight and I was five, she was put into a younger group. Looking at her with her "peers", she seemed lost, adrift in the complexity of normal relations. The overwhelming feeling was for her vulnerability and her separateness. From early on I defended her against bullies despite my natural cowardice.
It is difficult to identify what defines a relationship with a sibling who has a mental handicap. Who's to say what a "normal" relationship is? But certainly one of the facets would be an appreciation of their vulnerability and an acceptance of the responsibilities associated with that. With some one who is mentally handicapped the vulnerability never really ends. Mary Kate will never grow up in a way that most people would understand and, now 30 she still needs to be looked after to a certain degree.
At some stage, in every relationship of this sort, protectiveness can be transformed into responsibility. For me, it happened about the age of 10 when due to changed family circumstances, I took on part of the role of looking after her and controlling her behaviour as an adult would. No longer were we brother and sister who played and scuttled around the coat tails of the adult world. It meant coming home straight after school, and later college, and having to stay in during summer holidays and on weekends to mind her, to cook her dinner. Responsibility, in a sense, took the fun out of the relationship. It curtailed my own life.
Some people have revelled in the role of minder and gone on to become carers or involved in some other such profession. The ability, to take on responsibility has stood to me over the years but I was perhaps too selfish or independent minded not to resent it slightly. I was relieved at the freedom I got when I moved out of home.
But what was difficult for me must have felt incredibly frustrating a ad unfair to Mary Kate. Here was her brother with whom she had enjoyed a relatively equal relationship, suddenly assuming responsibility and control. It must have been the first time she realised she was, in some way, different.
AS WE grew up, the gap between us widened. I went on to do things she could never do. She compensated by imitating what I did. She would never be able to read but she insisted on carrying a book around with her at all times like I did. At home she "took notes", copying out the letters she saw with a studiousness that would shame an emeritus professor.
When I moved out of home, she again must have become aware of the gap between us. I brought her around Trinity College where I had rooms and she began to cry. Eventually, I coaxed the reason out of her she thought Trinity was nicer than her training workshop which she only attended during the day.
She decided that she would move out of home too.
It was a revelation to us that she was able to make the decision unilaterally. The next problem was finding her a residential place. For a family with a mentally handicapped person in it, the problem of finding residential accommodation is one of the most emotive issues the places are very limited. Some families literally cannot cope with the mentally handicapped member not because they don't love him or her but because the demands can be huge. But funding for residential places is pathetically small.
Fortunately Mary Kate is not severely handicapped and was much less of a handful than many others. She would be classed in the moderate range and is now capable of looking after herself to a certain degree. Physically, she portrays only some of the features associated with a person with a mental handicap. She looks quite "normal", except that instead of appearing 30 she looks 14. Eventually, she was accepted to a residential centre in Monasterevin, Co Kildare, called Moore Abbey.
She loves her new home and comes to the family home most weekends. She works now, so the gap between our achievements is smaller I work in a museum and she makes bra straps in a sheltered workshop I don't know which of us fulfils a more useful function.
In recent years, as two independent people, we have got on better. She has a great sense of humour. I am immensely proud of her and I think she feels the same about me. Instead of looking at her as different, I have tried to make our relationship as normal as possible.
PEOPLE tend to treat her like a child, giving her sweets and toys as presents, while I give her adult presents a trendy hat perfume, a book token. Sometimes these gifts are met with incredulity, other times with a tinge of disappointment, but I think she knows what I'm getting at. I also consult with her about my life Should I buy a house? What do you think of my girlfriend, she has a very good gut instinct about life.
A woman I know who has a mentally handicapped daughter once said she hoped her daughter would grow up to be like Mary Kate. I took it then as a great compliment to her upbringing. But now I'm not so sure. I think Mary Kate did most of it on her own. When she was born, the doctors told my mother that Mary Kate would never amount to anything. They suggested that she should institutionalise her.
Mary Kate is now a well rounded person who in many ways is more content in herself than many people her age. At the end of the day, there is only a certain amount people can do to help someone like Mary Kate along the road. Like the rest of us, she is basically going through life on her own, with a little help. I think it has been a pretty remarkable achievement.