Written by Liz Hobbs.
Disclaimer: this is a personal blog by a BuDS member. The views expressed are personal and don’t necessarily represent those of BuDS or our Trustees.
The fight for disability rights and inclusion is nothing new. Back in 1950 the wife of my great grandmother’s stepson (Rosalind Chalmers) contracted polio. As a result of this she suffered from its lifelong effects and disabilities. In 1966 she wrote an article called ‘Victim Invicta’ about how disability affected her and her family’s life. She contracted polio when her children were just 5 weeks old and 2 years old. 14 years on she was paralysed, used a wheelchair, needed daily personal care, couldn’t look after her children and had to constantly rely on others to help her. It also talked about how things should be improved for disabled people. ‘Victim Invicta’ was published in a book called ‘Stigma – The Experience of Disability’.
Some of the things she discusses seem very old fashioned but others I think would strike a chord with many disabled people today. How can it be possible that 56 years on, disabled people are facing the same battles? She talks about the need for there to be up-to-date information about ‘gadgets and equipment’ available when people leave hospital after life changing illnesses and accidents. She says there should be advisors who can discuss housing, grants, general advice about problems and how others in similar situations have overcome them. She believed that ‘if all this information could be pooled, together with conventional medical advice, and made available before the return home from hospital’ it would prevent ‘an enormous amount of worry and despair’. She goes on to say that the advisory service should continue once the patient is home because it ‘might avert a few crises before they developed.’
The sad thing is that from the many enquiries that BuDS receives week in week out, and which our Enquiries Team endeavour to help with as best we can, this still doesn’t seem to consistently happen. People end up having to form or join their own support groups of people in a similar situation or with similar conditions in order to gather the snippets of information together. Having done this, we must then batter down the doors of councils, service providers, health care providers and many more organisations/places too, just to get what should be provided so we can participate in society on an equal level to everyone else.
Another thing that Rosalind discusses is the fact that when you acquire a disability it can mean that you may not be able to continue with the job you used to do. However, she says, it is essential that disabled people should still find themselves ‘of use’ and that ‘new ventures’ should be things that they can do by themselves, or as close to independently as possible. This is something again that we hear about so often at BuDS. So many disabled people struggle to get into or stay in employment and yet we have so many skills and so much talent that could be used in a constructive and meaningful way, if only employers would think outside the box and do things a little differently. It’s not even that hard. At BuDS we work really hard to have a working environment which works for not against our disabled employees. We have a lot of lived experience, but there’s always more to learn and we will always listen to our employees to find out what works for them and how we can make things better. We let people chose the hours and ways they work which are best for them. This means they can attend hospital appointments; if mornings are tough, they can start later in the day; by working remotely, they don’t need to calculate into their ‘spoon’ energy allocation for the day having to get to and from the workplace and if they want to work from their bed, well that’s just fine too. More to the point, if they are going through a rough patch, they know we are here to help and support them and not criticise them for disability related things beyond their control. What’s important is that the things get done and that people feel they are achieving a good standard of work in a way that works for them. If only more employers would take on this way of working with and not against their employees, so many more disabled people could be making a valuable contribution to companies and society as a whole.
We offer similar support for our volunteers and many disabled people use BuDS as a stepping-stone to get back into work. By providing a supportive and friendly environment we aim to help to build confidence, increase relevant job skills and fill gaps in CVs to empower people to make that transition back into a work, if that is what they want to do. Again, it’s not rocket science and yet so many volunteers have told us that coming to BuDS has made such a huge difference to them because they have not had the same opportunities or felt so included and valued for their work before. We still fondly remember one of our volunteers who gave us an unofficial motto of ‘BuDS, it doesn’t matter how weird you are’. We value everyone for who they are and what they can offer, and we work with them to find the things they can do rather than focussing on the things they can’t. We are really proud of the amount of our volunteers who go on to get jobs. However, how can it be that nearly 60 years on from when Rosalind wrote her article that we are still fighting to feel that we are ‘of use’ in other places?
Another poignant thing that Rosalind talks about is when she was in hospital and, on being taken out of the ward for the first time, the nurse stopped the wheelchair at an open doorway where she saw the grass. She reveled in how green it looked. She ‘stared at it in astonishment and exaltation’. She said that that one moment seemed to almost balance the scales of all the pain, frustration and humiliation she had been feeling and that ‘such an opportunity to see everything freshly again is not easily forgotten. It is something to carry forward into the mundane struggle and days of inching progress, when, like Alice [from Alice in Wonderland] it seems to take all the running you can do to stay in the same place.’ Having disabilities can be oh so very tough, and I know for sure that feeling of having to put every ounce of effort into just keeping going. Progress can seem either non-existent or so minute that, if you aren’t careful, you might just blink and miss it. Sometimes it can feel so hard to keep positive and reading Rosalind’s article brings home that this too is something that disabled people have always had to deal with.
I take heart in this, it shows we are not alone, but as Rosalind suggested, I will continue to look out for those moments which balance the scales and I’m going to keep looking out for that ‘greenness [of the grass which is] of a quality beyond memory and beyond imagination.’ Living with disabilities isn’t easy but each of us is amazing and we tackle things every day that others don’t have to even consider. Be proud of even the tiniest things you achieve each day and let’s keep working together to make the world a better, easier place for all disabled people to live in. Maybe in another 56 years’ time, someone will read this and marvel at how far things have progressed and how much better things are.