Jameisha stood on the right smiling in front of a street sign with Lupus Street SW1 written on it.

‘We all want to live the lives we choose’

Jameisha talks about the impact of a hidden impairment and how attitudes affect her daily life.

As a young person living with Lupus and a few other hidden impairments, I have had my fair share of challenges confronting attitudes surrounding my conditions. These experiences often come from well-meaning people, but they are a marker of how we need to change as a society to be more understanding and inclusive.

I have become very self-conscious about how people see me as a young person with an invisible impairment. So many thoughts go through my mind. What’s everyone thinking when I sit in the priority seating area? Are people judging me for getting the lift instead of the stairs? Are people staring at me for using the disabled parking space at the supermarket. It got to the point where I wouldn’t take help in fear that I would be judged. Ultimately, the consequences impacted my health.

These thoughts have come from real life experiences

I’ve had comments from people on more than one occasion telling me to get the stairs instead of the lift because I am “so young and healthy.” I once plucked up the courage to ask for a seat in the priority seating area on the train because I couldn’t stand any longer on my bad hip. My request was met with blank stares and lowered heads. It still feels humiliating thinking about that as I write this.

To the left Jameisha's is looking direct at the camera. Half of her face is shown. She is wearing glasses, a headscarf and headphones. To the right, there is half a tube window with the big round sticker on the window which says Priority seating, please consider passengers when using this seat #travelkind

There are also many barriers when it comes to the workplace. Many employers out there do not understand hidden impairments. It’s so frustrating. Part of me trying to live the life I choose involves the ability to work, but I shouldn’t have to sacrifice my health in order to financially support myself. I’ve had numerous jobs where I’ve been transparent about my conditions, but employers still were not able to offer me the support I needed. In fact at one job, my contract was terminated due to a Lupus flare up.

No-one offers me help because they can’t see anything is wrong

I try not to think that people are inherently bad. I think having a visual aid plays a role in that. When dealing with Lupus on a day to day basis, no one offers me any help because they can’t see that anything is wrong. After my hip surgery when I was on crutches, random strangers were bending over backwards to help me. It was a very interesting experience to say the least. At the same time I should add that even with a visual aid like a walking stick, wheelchair or crutches, I have spoken to many people who still face obstacles when it comes to societal attitudes. We still have work to do.

Jameisha's hand outspread and face up, with the Please offer me a seat badge and card. The text on the card says Please offer me a seat, Remember not all disabilities and conditions are visible.

One thing I had to do, to live the life I choose is to change my own attitude

I decided to put my health first. If I need to get the lift, I have to overcome those thoughts that stop me from doing so. I continue to be transparent when applying for jobs and focus my attention one roles that will not cause further harm to my body. I still have trouble asking for a seat on the train, but I’m working on that. The Please Offer Me A Seat badges and signs I have seen on public transport have shown me that there are steps being made to change attitudes in how we treat people with hidden impairments.

We all want to live the lives we choose

That goes for non-disabled and disabled people. Unfortunately, not everyone is able to, and societal attitudes play a part in that. For me, as someone with an invisible impairment, something that will help is shifting the way we think. I definitely feel we are making positive changes, but I think we need to change faster. I hope that with more disabled people speaking out and being visible (whether their conditions are visible or not) we can get to a place where everyone lives the life they choose.

We know there is still work to do until all disabled people enjoy equality and fairness, with digital and assistive technology playing a huge part in this. We all need to work together to change society for the better.

There’s something everyone can do to be a Disability Gamechanger so get involved in the campaign today to end this inequality.

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