Guest post by Jean from London. Jean has Ehlers-Danlos syndrome, a painful condition which means she is prone to muscle tears and dislocated joints. She uses a wheelchair most of the time. Jean is an active campaigner for disability rights. She is sharing her story as part of our 100 days, 100 stories campaign.
At the beginning of 2013, I had to put a complaint in to a London bus company because a driver refused to deploy the ramp and let me on.
Instead of dismissing my complaint, the company actually asked me to go in and speak to the management about how disabled passengers should be treated.
Then they asked me to go in again and speak to the bus drivers – and after a couple of months they said, “How would you feel about us paying you for it?”
Before that, I hadn’t been able to work for seven years. Part of the time this was because I was unwell, but for a lot of the time it was because employers weren’t prepared to support my needs or make adaptations.
A couple of places I applied even offered to give me an interview, but then withdrew the offer because their offices weren’t wheelchair accessible. It was ridiculous.
My new bosses have been really supportive, even offering to contribute towards a new reclining wheelchair, which I will need at work.
However, when I applied for funding from Access to Work for a support worker and a better wheelchair, I was rejected.
One of their reasons was that I wouldn’t be working enough hours, and would still need to claim benefits. But how am I supposed to build up my hours, and start to come off benefits, without the right level of support and equipment?
At the moment, my fiancé has to take me to work and act as my carer. It is difficult – we find it hard to balance his being my partner and being my employee. When he doesn’t do things how I want them, it feels very hard to tell him so.
Add in his own health issues, and wanting to pursue his own interests which have to constantly be put on a back burner, and it causes conflict in our private time.
I felt this was unfair so I appealed, and with the help of my MP I was successful in getting funding. I’m now in the process of finding a support worker, and Access to Work also paid towards the cost of the wheelchair and a small travel allowance.
I’ve looked at how the company views and treats disabled passengers, and made some recommendations for improvements.
I’ve also run disability awareness training for bus drivers. We simulate various impairments – such as being blind or mobility impaired – and ask staff to try to move around inside the bus while it is in motion. It demonstrates how difficult travelling can be for disabled passengers.
I go to conferences and events, and we do a lot of work with mental health and learning disability charities.
One thing I’ve noticed is that disabled people will come and speak to me because they see me in a wheelchair. The fact that I have an understanding of what their situation might be seems to make a big difference.
My work is challenging, fun and rewarding, and it brings confidence and self-worth. I feel like I’m contributing something and making an improvement. Even though the majority of my income is still benefit-based, I am hoping that I can slowly build up my hours.
My employers saw something in me and built a new role around my abilities, and are investing quite heavily in me to ensure I have everything I need to fulfil my potential. I love it.