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It’s just a bout of Chronic Sorrow

by Hilary Stace

I’m usually full of disability positivity but sometimes I have a bout of Chronic Sorrow. Chronic Sorrow is a term named by some wise person for the condition some parents of disabled children have. It can be just below the surface or well-buried, but it’s almost shameful to admit to. It’s a sort of grieving for the so called normal child who isn’t. It is usual to experience some grief process at diagnosis but then most parents just get on with it and soon realise that there won’t be a normal trajectory and the path is likely to be challenging at times.

Most parents are devoted to, and love passionately, their disabled child and wouldn’t change anything about them, but there are times when the impact of the real world is just tough and the years of battling get to you. The endless explaining and assessments and form filling for a small disability allowance or a couple of hours of teacher aide time. Being prepared to scale the next barrier. Always being on duty. Nothing is straightforward and everything is time-consuming.

Transition times are risks for triggering Chronic Sorrow. Such as when other teenagers are leaving school to go to university or leaving home for work or travel. They may have learnt to drive. You might have been lucky to find a school that will ‘take’ your child. And now yours might be staying put at school, often without any qualifications and despite everyone’s best efforts nowhere near the aspirational NCEA Level 2 that is now the essential ticket to successful adulthood.

What’s more, our kids are staying put in the same house and any processes into other residential arrangements are long and fraught. We continue to drive them around or cross our fingers that public transport will work smoothly. Then the other young adults graduate with degrees and have partners, marriages and children – some even in that order. Ours go to day programmes if there is a local one. A minimum wage part-time job seems a pinnacle of success.

Arrangements are fragile. Don’t hold your breath. That excellent teacher or teacher aide moves on, the inclusive sports team disbands, the job pilot or course comes to an end, or the accommodation falls over. Back to square one. You don’t want other people’s pity or charity. You don’t want good deeds done to your disabled offspring ‘as a favour to you’. What about because the young disabled person is a human being with rights, dignity, feelings and a contribution to make? Some security would be nice. In the back of your mind that fear about what will happen when you are no longer here.

Another crisis could be just around the corner. A recent bout of Chronic Sorrow was triggered after an understanding talk with my son’s employer. After 10 years as a loyal employee the job was not working for him or them. And yes I could see that. But what chance another job when even university graduates are unemployed? Meanwhile those Government messages on the importance of work grate sharply. But where are those patient, inclusive, disability friendly employers?

Success stories are few. Friends and colleagues with disabled family members are also struggling with poverty, fatigue, irregular or inadequate services and fragmented support.

Where are our champions around the Cabinet table, or other levels of government? If there, often invisible. Meanwhile the public message is cut, cut, cut.

In my PhD thesis I used the term ‘love and luck’ for the qualities required for good outcomes for autistic and other disabled children. I borrowed it from my wise Aspie friend Matt Frost who used it to describe the qualities he had found essential for his own inclusion. Love means endless advocacy by a family, most often a mother, and luck means finding the right people, services and support when you need them.

On the down side, when these are in place you sometimes get the media stories which the late Australian activist and comedian Stella Young called ‘inspiration porn’ which only serve to further other and exclude. (Amazing people who have ‘overcome’ disability. So why haven’t you?)

Meanwhile the stories of those with neither love nor luck can be read in negative articles. But why should such intangibles as love and luck be required to raise disabled children, and for them to grow up and to grow old with dignity in 21st century New Zealand?

Currently we are on the lookout for some luck. That the right people and opportunities will turn up. Not just for us, but for everyone who needs it. As one door closes a new one opens and all that. A more positive future.

Today I am tired. Tomorrow I will bounce back with hope.

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