THE BLOG

Invisible Disability: Blessing Or Curse?

09/06/2017 11:12 BST | Updated 09/06/2017 11:12 BST

Whilst this might seem a strange title for a blog on disability, I count myself incredibly lucky to have had a hidden disability all of my adult life. If I had to choose between invisible and visible, I would choose invisible every time. Why, you ask? It stops the questions. It stops the pity. It stops people thinking you are 'less' of a person because you are in some way deficient.

My first personal experience of disability was at Brownies when I was about eight. A young girl with Down's syndrome came to one of our meetings. The other girls drew back because she looked different. I went straight over to her and engaged her in a chat. I was mesmerised. I did not pity her. I wanted to know more about her. Pretty quickly I realised she was just the same as me with a few physical differences but basically a little girl who liked the things I liked. We got on famously. Later, at secondary school, a girl in my class was going blind: Susan. I did not even want to imagine how it would be to lose my sight but I was fascinated by her unique outlook on life: so calm in the face of such terrible adversity, so stoic and strong.

As an adult, having an invisible difficulty has been a constant source of stress. I should say that I do not consider myself disabled following successful heart transplantation eleven years ago. I have a beautiful shiny new heart that beats regularly and fills my body with blood in all the right places. Having not known what that was like before transplant I can tell you I still marvel at it every day!

As a young person applying for jobs I never declared that I had a heart condition. I was born with HCM Hypertrophic Cardiomyopathy. I inherited it from my mother who died at 50. It is detectable only by ECG. I cannot tell you how many medicals I had with company doctors who declared me a perfectly fit and healthy young woman. If only they knew. It was a strain undergoing examination and having to lie. Having to lie on application forms that asked about health. Why didn't I come clean?

I did not declare my disability for the reasons stated above: I did not want to be different, deficient, pitiable. I wanted to just be me and show what I could do. In much the same way as I, a staunch feminist, have only ever wanted to be valued as a person and not as a woman. I have deliberately avoided women's clubs and I have deliberately avoided identifying as a person with a disability. People handle things in their own way. My strategy has served me well. I would never have got the high-stress jobs I did before I was a lawyer if my employers had thought I had a dicky heart.

The difficulties with invisible disabilities are immense however, especially in the work context. If you don't tell your employer you have an invisible disability they are not obliged to make the reasonable adjustments for disability the law requires under the Equality Act. Similarly, the Act offers many additional protections against dismissal and other unfavourable treatment, which are not available if you have not declared.

I regularly advise my clients with mental health disabilities not to declare their conditions. Why? Prejudice with a capital P. As a society, we are at least all talking about mental health but we are a long way from accepting mental health conditions. I know. Every day I defend people who are being pushed out or fired because they have had a breakdown, have bipolar disorder or another mental health condition. Our society is still not accepting of and remains essentially fearful of mental health. The press perpetuates negative and sometimes scary stereotypes around people suffering with mental health issues.

It's hard to see how the law could or should be changed to protect those with invisible disabilities. If you work in an organisation that is big enough to have an Occupational Health department you might want to tell them about your condition. If the information is within the organisation your employer is deemed to know. And you can ask them not to share it. If you choose to keep it under the radar but work starts to become an issue that is the time to make sure your employer is aware.