I’m 51 years old and I’ve worked in a social care setting since 1985, when I was 20. Although I’ve worked with older people, children, people with physical disabilities and mental health issues, the bulk of my working life has been with adults with learning disabilities. People might say I’ve given a lot of my life over to the care of others. It’s actually more complicated than that. Because I’ve gained so much from being in the company of others who have support needs of one type or another. I’ve gained an understanding of how to teach and how people learn. This was quite handy when I became a dad. So my boys have also benefited from having a father who worked with adults with learning disabilities.
Why am I talking about this? Well this week A World Without Downs Syndrome was shown at 9 on BBC2 on Wednesday night. If you haven’t watched it hurry up before it gets taken off IPlayer. The programme explores the decreasing population of people with Downs Syndrome. Which I think is a shame. No, that’s not honest enough. I think it’s a tragedy. Is that an appropriate word for how I’m feeling? I don’t know. Help me if you can. The reason the population is decreasing is due to expectant parents choosing to abort when told they’re carrying a child with Downs inside their bodies. Which is their choice. But surely there’s a duty of the medical profession to give accurate information and not just scare the hell out of people. Having Downs is not an illness. I was shocked to learn that until 1970 children with Downs weren’t considered suitable for education. And only in 1981 were children with Downs allowed to attend a school which wasn’t ‘special’ but the same school our own children attended. In Iceland they have an advanced screening process that enables screening for Downs without risk of harming the child. The result is that 100% of unborn babies shown to have Downs are aborted. I call that more than a shame or a tragedy. And this test has now been approved for the UK.
When Penny was pregnant with our two boys she was offered screening for Downs. She refused. To be screened carried some risk to the baby. And if we knew we were having a child with Downs it would have made no difference. It was not something we were scared of. We need a campaign to educate people about Downs. And Wednesday’s programme was a good start. And this is a blogging site which can also help.
On the subject of disability the government made the announcement that they weren’t going to continually waste money and cause continual anxiety in a section of the population claiming Employment and Support Allowance. This is the benefit people claim when they have a disability that makes finding employment difficult. The devil is in the detail and I won’t stop highlighting the injustice of how the Department of Work and Pensions operate until it stops.
Teresa May is enjoying a honeymoon period. It needs to end and she needs to get to work on tackling injustice in the benefits system, the lack of funding in the health service and in social care. So that people are allowed not just to die with dignity, but to live with it too.
Things I recommend; action.
Things I don’t recommend; inaction and trusting those in authority to know what they’re doing.