Today we are hearing from a brave lady who, despite the effects of her disability, doesn’t let it stop her from living her life and working her dream job in the city. She wishes to remain anonymous, but is sharing such details about her disability is a huge step to help open the dialogue about hidden disabilities. Thank you contributor!
Q: Can you tell me about your disability?
When I was born I contracted septicaemia. This damaged my left hip and caused other complications as I was growing up. I had lots of surgery as a teenager. When I was 21, my hip became arthritic and I had a total hip replacement – if I had £1 for every time someone said “oh you’re young to have a hip replacement” I would be able to retire! And now I am nearing the time when I will need this replacement to be replaced! Additionally, as a result of the complications, my lower spine is disintegrating – there is nothing that can be done about this. The most recent issue for me is nerve damage in my left foot, creating a loss of feeling in it. This has meant that I have been working at home for the last three months, as I cannot travel on public transport.
Q: What is your typical journey like (prior to the badge)?
My typical journey would be very stressful, so I avoid travelling at peak times when possible. People have pushed me out the way to get to a seat, and pregnant women ask me to give up my seat (which I would do). At really bad times, I have just stopped and tried to work out whether I could get someone to come and pick me up from Central London but my family works and they support me a lot anyway. Sometimes I get to travel with my husband which is great. Even if I don’t get a seat, he helps me and always tries to stop people pushing me about. This year the traveling got too much for me, hence working at home. It’s really important for me to be able to keep working.
Q: What happens if you don’t get a seat? How does this impact your day?
It’s just about getting through the day, dealing with tiredness, stress and pain. It gets you pretty low when every day is like this. I also walk slowly and people are not shy about being impatient and pushing me out of the way. It doesn’t just impact on my day. It impacts on my husband’s too as he has to look after me, drive me around and look after himself.
Q: Are there any visual cues that would signal you need a seat (prior to the badge)? i.e. walking stick, crutches. How successful is this?
None. I work very hard to make sure that people can’t tell I have a disability. So I check in with people to make sure that I am not limping, for example.
Q: How do you feel about the badge trial?
I think it’s fab idea. I emailed TfL some years ago to ask if they would do this, or where they planning to do this. Their answer was ‘no’ on both counts, so to see a complete turnaround is great. Personally, I am a little apprehensive about wearing the badge as I am extremely private about my disability.
Q: How do you feel living in London with a disability?
I have so many reasonable adjustments in my life that it wouldn’t matter where I live, they would be the same. I have used public transport much more than ever since I moved here 13 years ago. For a long while I avoided working in Central London but I had no choice when my dream job came up at London Bridge. This year I have to come to terms with the fact that my body will not always do what I want it do, and to come up with different ways of doing things.
Q: What do you think would most surprise those without a disability about the way yours affects you?
That I work extremely hard for people not to know that I have a disability. It is a constant stress for me that people might find out. Only my immediate family, my husband, my best friend, and my manager at work know. Culturally for me, there are still some disgusting attitudes to disability. I have heard people within my outer social circle describe disability as a “defect”. I won’t expose myself to that in my own home or socially. This is what I like about the trial – I can do my bit to try and raise / change people’s awareness but with some relative anonymity. Wearing the badge, for me, is a huge step but I don’t think I could go any further than that right now.
A huge thank you to this brave contributor! A brief snapshot into the daily commute of someone with a hidden disability and the struggles she goes through.
Check back next Friday for another profile.