In 2008 a study into ‘hidden’ or ‘invisible’ disabilities was carried out and a report was produced by the National Union of Journalists’ Disabled Members Council. It made very interesting reading. Whether the writers of the report realised it or not, putting it out there on the internet for anyone to read has the potential to help other people who suffer from ‘hidden’ disabilities, including non-journalists, as well as (I hope) influencing perceptions within their own profession. Some of the replies struck me in the report, because I have hidden disabilities myself:
“I’ve both visible (walking difficulties) and invisible (chronic pain) disabilities. I find that in my case they do lead to different forms of discrimination, but the specifics mean that may not carry across to everyone. The visible disability occasionally leads to abuse in the street, the invisible one doesn’t because people can’t see it (OTOH it might lead to problems if I didn’t have the crutches to show that I’m using disabled seats for a reason).The invisible one has lead to discrimination at work because people are reluctant to acknowledge its effects. ‘Pain is affecting your work, but we’ve already given you a chair for that.’ Management are good with tangible things like needing a chair or a disabled parking space next to the building, intangibles like continuous pain affecting your work rate are more of a problem because they might need to think about something and there might not be a solution they like. That said my first line supervisors have been universally excellent, it’s second line and above that are complete idiots, the difference is probably down to first line supervisors needing to deal with you day to day and getting a better understanding that way.”
“I think people choose to ignore what they cannot see or understand, and people who are lucky enough to be in good health find it hard to relate to people who are not. I think the public reaction is often because people don’t have the time to listen or simply cannot understand how things affect people. Again I think there is a lot of ‘disbelief ‘and some people simply think you are either moaning over nothing or looking for sympathy.”
“I do believe people choose to ignore the problem. I feel it is a bit of both fear and ignorance as they aren’t sure how to react and the general public believe that we disabled people are costing too much money and feel we are unable to lead a normal life, which isn’t true.”
“There is an assumption that if they can’t see it or it isn’t obvious then it doesn’t exist. They accuse disabled people of cheating. If you are doing a job well and are articulate, they assume there are no other obstacles to deal with due to disability. They assume what you can and can’t do by how you appear to them.”
“I have Rheumatoid Arthritis, and have other illnesses that run alongside it but that are largely due to the RA itself or have developed as a result of the RA. The problem I have is that if anyone were to look at me when I was in work, I appear to be fit and well, and nobody can really tell whether or not I am sufferance (sic) in silence. I am not a person who complains constantly about my symptoms, or that really wants other people to know how bad it is sometimes, I tend to “grin and bear it” and bear it’ and have difficulty in explaining how it really affects me without it sounding totally stupid and unbelievable to anyone who doesn’t understand. Even my close family are not fully aware of all the problems this causes me, and most of the time I carry the burden on my own.”
The respondents were also asked about media protrayal of and attitudes to hidden disabilities and, again, I’ve pulled out some of the replies:
“I feel that whenever the opportunity arose i.e. promoting the positive side of disability then hidden disabilities should be highlighted. It is easier for people to understand that someone who is blind (such as myself) or someone in a wheelchair may have difficulties in their everyday life but for someone with a hidden disability everyday life can be very difficult. There are documentaries on a variety of disabilities and I think more emphasis could be put on hidden disabilities and how people are affected by them.”
“In my opinion the media spend very little time getting their facts right, and would not devote the time to even begin to understand a hidden disability, let alone be able to write about it. Maybe if they were to attend conferences or listened to what people with disabilities say and the sort of things they come up against, it would maybe make it a bit easier to understand.”
“I feel that there should be much more awareness and information available to managers and businesses to give those with long term disabilities more dignity and support – those who choose to work rather than claim long term sickness benefits would seem to be severely penalised for their attempts to do the right thing and to do their bit for society.”*
* NB. I don’t agree with the implication that people on benefits are somehow doing something wrong but I do agree that not enough is done for those of us who are in work and that fairer attitudes to disabled people in work might make it feasible for some people to work with appropriate adjustments (particularly to working hours) who aren’t currently able to do so.
And in answer to the question about what the Government and charities could be doing to help people with hidden disabilities, this answer stood out for me
“We need awareness campaigns, having more support groups for helping those of us with hidden disabilities cope with reactions. There is a lack of government recognition that our life is impaired and lack of awareness amongst health professionals and employers for making or assessing reasonable adjustments under DDA.”
Every survey carried out and published has to be a good thing but it would be so much better if the world worked in such a way that they weren’t needed.