Maria Diamondaris may not have known it, but she made huge difference to the lives of many people. After Edna came back from Tokanui with that burn on her leg, Maria lobbied IHC and anyone who would listen. She wanted people with severe disabilities to have the option of community living. And she won.
Back then, IHC seemed to cater only for people who could work in sheltered workshops doing menial work. Putting pegs together, or things in bags. It made money and it also meant people were busy doing things so very little care was need. I talked to Robert Martin about this and he said people didn’t even get morning and afternoon tea breaks, staff did, but they didn’t.
We still have sheltered workshops dotted around the country but not many now. Many people assume they are a good thing, where ‘handicapped’ people can work and achieve but what people don’t realise is that they don’t get paid real wages. They are assessed and paid what they are deemed to be worth well below the minimum wage.
I have a friend in Rotorua who attended one which closed a couple of years back, He was accessed and deemed to be so incapacitated that he got a very small wage. On the weekend he worked as a cleaner for full wages. Never understood how that could happen.
It is a terrible blight on the lives of many disabled people, having to work for a pittance and being told they should be grateful for their lot. Everyone has the right to feel valued and be paid a real wage.
IHC made money off these people so didn’t seem to want the unproductive people who were unable to work in the workshops. They would need care during the day once they reached 21 and had to leave school.
Edna’s mother changed that. They finally opened a home for severely disabled people in Tauranga. I started to think perhaps they could eventually take Suzanne. I didn’t really want to go there, she was my baby and my responsibility but the fact was, she was getting heavier, and heavier every year and I was getting tired.
Around this time, I started attending IHC meetings for parents. I had been to some before and I always had the same problem. Those parents worried about their children’s future just like I did but their worries were so different. They worried about employment and relationships, My worried were about whether someone would feed and change her and treat her with love and kindness.
I also learnt about real lives. Sex of course for people with learning disabilities wasn’t allowed except under strict conditions. Even then is was controlled by the system. There was a couple who wanted to marry. IHC would only allow it, if they were both sterilised. Even though they wanted to have a child, to be together so eventually agreed.
Suzanne did go for respite on occasions and I hated doing it, but I needed the rest. The system was stupid. I couldn’t get more money from it to help with costs and my other alternative was to put her in to care which costs the government even more.
What I knew was, something was going to have to give. I really didn’t know how long I could keep it up. And that made me feel guilty. And a failure.
And so my mood spiralled down. There didn’t seem to be any way forward.
© Barbara Hart 2014