As Ann Young approaches old age it’s not just her health that worries her, it’s a lack of income that concerns her more.
In the disability movement we talk about choices and rights but what choices and rights will I really have as an older disabled person living on the state?
I have tried to work, all my adult life, it hasn’t been easy and two redundancies have inflicted some deep scars. But I still believe that work pays in so many ways. It’s not just about pride or being financially independent and in control. For me it’s about securing a future for myself and my family where I don’t become dependent on them or worse still, the state. I fear getting old in a society that does not seem to value older people let alone older disabled people. Allan Sutherland, in his brilliant poem, asks “What Happens to Old Epileptics?” I want to know, what happens to old disabled people? I have met very few older people with my own condition, cerebral palsy. Where do we go and how on earth do we live in our old age if we haven’t paid into the system? Are we shut away in our own homes reliant on a crumbling social care system?
My biggest nightmare is to be trapped in an institution. I’ve been there, done that. Even as a young child it wasn’t a pleasant experience. If we wish to control our own destinies don’t we need an income in order to do that?
Maybe I’m missing a trick. Do disabled people on work-related benefits get their national insurance paid and build up decent pensions? Is that why some can volunteer to work for no pay? Someone please tell me because the way I see it we are facing a time bomb of increased hardship and poverty as a generation reaches old age with no security, no independence and no choices about how they spend their twilight years.
I except that some disabled people will never be able to compete in the labour market and face a life on benefits due to the nature of their impairment. But I would also argue that our labour market has become so competitive in recent years that people, including myself, have just given up because no matter how capable they are, it is nigh on impossible to compete with the influx of non-disabled people desperately needing work. So what happens to those of us left in the dole queue? Do we not need to earn a living? Is there some magical everlasting safety net just for us?
I can’t see that I have any different choices from non-disabled people. I still have a mortgage to pay, a family to provide for and a future to worry about. Luckily I worked for 26 years in good jobs and have managed to secure a small pension while saving a bit to help my son through higher education. But I haven’t paid 30 years’ worth of national insurance contributions so unless I earn for another four years all the blood, sweat and tears will have been pointless as I approach the end of my life with very little security.
So, what is the answer? For me it was self-employment. I am lucky that there are still a few local disability organisations who believe in me as a professional disabled person. But we need more, many more to believe in disabled people and take a chance of them.
Employment opportunities for disabled people are shrinking. The quota system was abolished in 1995 with the introduction of the DDA and many sheltered work schemes have vanished. So isn’t it time for user-led organisations (ULOs) to be even more proactive in creating work opportunities for disabled people? It makes sense from a grassroots perspective. I want to receive services from people I trust to know my issues and share my experiences. Isn’t that the whole point of grassroots organisations?
If ULOs are really committed to empowering disabled people and reducing poverty they could use positive discrimination, which if the internet is correct is still legal under the DDA. I don’t like having to resort to any form of discrimination but in reality even I recognise that we need something to even out the playing field in the workplace and give disabled people a leg up. I’m tired of hearing the argument that service providers, which many ULOs are these days, owe it to their clients to provide the best service possible and so go for the most experienced and qualified person for the job. Of course this will often be a non-disabled person who has had access to education, training and knows the job inside out. Or someone who has been a PA to an existing disabled employee which gives them an unfair advantage.
There are loads of highly qualified non-disabled people all clambering for the same few posts. Like women’s groups and ethnic minority organisations, we need our grassroots organisations to take affirmative action and employ more disabled people. This has been argued so many times before but I feel we are losing sight of why ULOs are really here! If people working in the disability sector really believe in the mantra of rights not charity, they would embrace the practice of providing more paid work for disabled people.
So if any disabled ULO chief executive or director is reading this, just ask yourself how you got where you are today. Was it pure merit or was it also because someone believed in you? Nearly 30 years ago two young social services managers took a chance on me, a young disabled girl straight out of college with no work experience whatsoever, just an English degree and an attitude. I owe those two managers so much. That job opened many other doors, gave me confidence and self-respect and started me on a journey that, although difficult at times, continues to give me satisfaction and pride in the things I have achieved. Other disabled people need that chance to learn about work, to gain confidence, experience and real financial independence.
I urge ULOs to take a long hard look at who they are employing and who they use as volunteers. Look at the routes into employment in their own organisations and how disabled people get the experiences they need to gain paid work. Make volunteering opportunities pay by creating a skilled disabled workforce. It’s no longer enough to encourage disabled people to volunteer and feel you are providing real opportunities, our aspirations should be higher than that. We’ve all heard of the pink pound, we need our own pound and with it the power to politicise, invest in our disabled people and have a real stake in our future. I don’t believe that I am alone in feeling strongly about this.