Disability – what’s in scope and what does it mean?

Apparently Autism is a disability, My schizophrenia is a slightly more complex label because apparently (and who decides these things?) a mental illness is a health condition which can be disabling but isn’t of necessity a disability. This makes me think that most of the time my illness is not disabling because I can go to work and stand in front of 1000 people and tell coherent stories illustrating messages in a meaningful way. However, when I am unable to leave the house, think I am dead and in purgatory, being punished by God for challenging him with my arrogance and the television is talking to me telling me to leave my job…well, you get the picture. When this stuff is happening I am disabled by my schizophrenia.

Gee I’m confused already and I’m the person writing this!

Many people – including me – struggle with the ‘disability’ label. Autism advocate, speaker, author and one of my role models Wenn Lawson sees Autism as a ‘diffability’ or different ability. This makes sense to me as the disability tag comes with some difficult connotations. Disability is often associated with a deficit or lack of ability to do something. This in turn often leads to low expectations of the person with the disability label. These low expectations come from all quarters – family, society, workplace, school, and the person with the label themselves. Low expectations often lead to low performance, dependence, lack of confidence, low self-worth. A person who has been seen as having a disability since childhood often grows up knowing more about what they can’t do than what they can.

Thoughts on disclosure

If a life of being told what you can’t do and having people doubt your competence is what having a disability leads to it’s no wonder that many people choose not to disclose to others that they have a diagnostic label. People not disclosing their diagnosis has a few effects. One of them is to compound a person’s self-stigma and confirm that they should not talk about the diagnosis lest people discriminate (and often people do discriminate and this can drive non-disclosure in the future). When a significant number of people do not disclose their diagnosis it can serve to make people with health conditions less visible in society. As an ‘out’ person with schizophrenia I am all too aware of this. I have met many other people with psychotic illness during my career who have come up to me and quietly said ‘I have schizophrenia. Please don’t tell anyone.’. Many pf these people are highly competent and excel in their chosen profession but I am the only person in the workplace who knows that they have a mental illness because, as a mental health advocate and ‘out’ woman with a mental illness, I am the only person they have apparently felt they could tell.

Disclosure is a really tricky concept. Many people do not disclose their health condition to their workplace because they (often rightly) assume they will be disadvantaged in recruitment processes or in career advancement and promotion.  Disclosure is an person’s own decision and is for them to make through consideration and thought. It saddens me that there is still such a prevalence of people not disclosing their health condition in the workplace due to concerns around discrimination or bias because in an ideal world, people would not be so terrified to talk about their health condition in a work context. In fact, in many ways, people who are able to disclose to their employer benefit because they can take advantage of things like workplace accommodations and adjustments. Also, for a person with a mental health issue, it is less stressful to be unwell and ask for time off if your boss knows you have an illess and how it impacts on you.

I will relate a little story, because that’s what I do. When I was 35, I had been working in my professional job in the Australian Public Service for just over three years. I got very unwell with psychosis and needed to spend a lot of time on leave and in hospital over the next few years. I had not disclosed the specifics of my illness to my manager but she did know I had an illness. I decided the best course of action would be to tell her what I was experiencing in more detail. My disclosure meant that nobody was assuming my extended time off work was for any reason other than my illness. My manager put me in touch with the human resources area and I got a rehabilitation case manager who was wonderful. The case manager helped me to access insurance I was entitled to so I didn’t miss mortgage payments and kept my little home. Being me, I used to visit my colleagues at my office every time I got a leave from the hospital because I didn’t want to get disengaged from my work. Two weeks after I returned to work from my most recent hospital stay I was given an award from my CEO because of my work in the disability network at my workplace. Soon after that I was back working full-time and (so far) my mental health has been manageable since then. Now my example of working together with managers and colleagues to maintain my good mental health is in my little grab bag of stories to illustrate living well with mental illness. I am very fortunate that I have a lot of self-confidence and value myself and so was able to disclose to my workplace.

Thoughts

• You are responsible for how you approach, view and describe your disability, health condition, diffability, difference etc
• Popular perception of diagnostic labels is often unhelpful and inaccurate
• There is discrimination and bigotry all over the place. Plan for how to address it
• Low expectations and deficits-thinking is not an accurate reflection of your capacities, but if you let it, it can become a self-fulfilling prophecy
• Reflect on your skills and accomplishments frequently
• Everyone has human rights. There are some rights specifically related to disability and health conditions
• Disclosure is your own choice and decision. Consider what the pros and cons are for each situation in which you might have to consider disclosure (job interviews, starting relationships etc)
• You have peers in the broader disability community. It can be really helpful to connect with them. You might find people with a different diagnostic label have a lot in common with you
• For all the deficits and low expectations there are many  examples of people succeeding with a diagnosis. It can help to find a few role models. (Some of mine are Professor Temple Grandin, Dr Wenn Lawson, Glenys Purkis).