71. TS and disabilty - some thoughts

I recently saw a post on Tumblr from a woman with Turner Syndrome asking if TS was a disability as she had always believed it to be. I decided to write this post rather than answer directly. Please note that this is only my personal opinion and reflections!
This is a complex question. There are many different definitions of disability. Here are There is a legal definition of disability in the UK. You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.
Further details here! https://www.gov.uk/definition-of-disability-under-equality-act-2010.
Obviously this legal definition is important for issues such as social welfare and social provision.
I found this definition on the World Health site
‘Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.
Disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives. Overcoming the difficulties faced by people with disabilities requires interventions to remove environmental and social barriers.
People with disabilities have the same health needs as non-disabled people – for immunization, cancer screening etc. They also may experience a narrower margin of health, both because of poverty and social exclusion, and also because they may be vulnerable to secondary conditions, such as pressure sores or urinary tract infections. Evidence suggests that people with disabilities face barriers in accessing the health and rehabilitation services they need in many settings.’
http://www.who.int/topics/disabilities/
I looked at the wikidepia entry for disability. This looks at more depth at issues such as spectrums of disability, issues around mental health, and the effects of long term chronic ill health
http://en.wikipedia.org/wiki/Disability
Then we get to the issue of disability rights. When I attended disability awareness training recently the trainer said that while the effects of childhood polio was an impairment, it was society that rendered him disabled. He also got us to consider various forms of impairment and what we should consider ‘disability’
Being legally defined with a disability is important for getting the necessary social welfare assistance and support in employment. Keep this in mind!
Having looked briefly at various definitions of disability (please keep in mind!), I now will give my tuppence’s worth on what I think about TS and disability.
First of all it goes without saying that all women with TS are affected in different ways and all of us have different health issue. I wrote in an earlier post about specific non height/fertility issues that women with TS face such as hearing, diabetes, heart and kidney conditions. I have heard horror stories about the treatment women with TS have received when these disabilities are not recognised. It is very important in these cases that we are given and indeed insist on the necessary support with these issues. But I do not believe that having TS in and of itself is something which requires us to be legally defined as disabled.
I had members of my family pressurising me years ago to use my TS to get myself defined as ‘disabled’. I actually was very offended by this as to me it send out as message that I was not capable (and their behaviour towards me on other issues re-enforced this). It made me feel like they saw me as second class. I was also offended as I saw this as taking away support from people with disabilities and undermining their real needs.
,p>I also get extremely concerned about what is really going on with TS women being called disabled. I often feel that this is to do with the issue of the alleged ‘Social/cognitive’ issues we are supposed to have (I know this from bitter experience!) and our alleged ‘Autism’ type behaviour. I cannot go into things further but in my experience these supposed issues can be used against us or to belittle us. Even if these issues exist (and there is a lot of controversy about whether they do!) I have never once seen any constructive or useful suggestions about how to help us.
I also get very concerned about the fact that as TS is a condition that only affects females, this focusing on cognitive/social issues is because of purported failure to behave in the socially prescribed manner females are supposed to. I can’t also help but link this back to our fertility issues.
We live a world where people who have disabilities (of whatever sort) are routinely stigmatised and discriminated against. As I mentioned earlier in this post, people who are defined as ‘disabled’ want to question just what is ‘disability’. In the UK, social welfare provision and employment rights for people legally defined as ‘disabled’ are increasingly under attack. As women with TS we should be very careful about any attempt to call TS a ‘disability’