But you look so normal

25 06 2014

There are probably hundreds of blogs with that title on the net today. It’s something many people with an unseen disability have been told. My response is usually ‘I am normal’ , even although my disability is one that highlights how abnormal I am, or how abnormal I should be just to appease society.

It’s no secret that I have autism. The shell looks fine if a little rotund, the inner workings are somewhat wonkily wired. I’ve often joked that to be a convincing autistic I need to rock back and forth and talk incessantly about trains or numbers. People would be more comfortable with me fitting that stereotype, one where I can garner sympathy, but I don’t. I can articulate rather well, I can even successfully take part in small talk and social chat. I have thousands of acquaintances. Socially I do ok. I am a strong independent person, even if I can’t cook. You will never see what’s going on under the surface to get me to that level of interaction. I look just like you. Normal.

You, who can socialise instinctively. Normal. You, who knows the cues to talk or shut up. Normal. You, who pick up on more subtle forms of communication such as body language or facial expression. Normal. You , who is unlikely to struggle with sensory overload or processing basic information. Normal. You, who probably doesn’t become catatonic at the sound of sirens. (There you go Lex Luther, there’s my weakness) Normal.

But you struggle to read me in the same way I struggle to read you and because you are in the majority, it’s expected I will change to fit in with you. In fact, autism is a developmental disability, I am expected to ‘develop’ my skills and understanding to become normal. Some people make a fortune out of trying to get people like me to develop normal skills so I can pretend I am normal to be like you.

Well you know what? I’m really fucking successful at doing normal. Too successful. I have to convince people of my disability. I have to persistently justify my struggles (or symptoms if you prefer such language), even to people who have known me all my life. They say, “but you’re just you, I don’t care what they label you, you’re still the same to me” and in this statement those who claim to accept me refuse to learn about how my brain works, what my struggles are, or how they could help me overcome them. They silence me with their questioning, ‘what is normal anyway?’ Immediately followed by telling me I should try to understand that I’m different and I can’t expect normal people to understand. If this is acceptance then I don’t get it.

And if I struggle to justify how my brain works to those who know me best, what chance have I got of convincing those who don’t know me that I need help and support or understanding? If my disability was visible, if I hadn’t learned not to stim or hide being ‘symptomatic’ (there I go again with that medical language) I don’t think I’d have to justify myself over and over again. I’m definitely not saying those with visible disabilities don’t have problems with justification, hell I’ve read about ATOS and the WCA, but if someone can see the problem they’re more likely to try and understand it. It’s easier to try to imagine mobility issues than it is an entirely different way of processing and thinking. Physical disability is visibly justified, it makes sense to them that there could be difficulties or support needs. When you look just like them and can pretend on the whole to act just like them, when you finally get the courage to say ‘I need help’, you’re met with ‘prove it’ and if I try to prove it, I’m made to feel like a fraud or a con-artist. Only then to be told, ‘prove it more’.

I shouldn’t be made to feel like I’m faking it just because someone else struggles or refuses to understand. Why should I have to fit in with your world? Why can’t you try to fit in with mine? I do look normal. I am normal. Like any normal person I have struggles and sometimes these require me to ask for help. How I appear on the outside shouldn’t define what I need or get.


World’s Maddest Job Reality

16 07 2012

Channel 4 are running  the Channel 4 Goes Mad season next week, which is intended to highlight the reality and stigma of mental illness. One of the programmes is World’s Maddest Job Interview where 8 job candidates try to disprove stereotypes held about those who have or have had a mental illness.

The Guardian writes about it in their article, The Channel 4 Goes Mad season challenges mental health stigma.

This post is written purely on assumptions made about the tv show based on what The Guardian say, and on my professional understanding of the reality of seeking work with an history of mental illness.

Now while the concept is intriguing and I have yet to see the programme so I can only talk of how I feel about what the media has raised so far, I have some concerns about this form of entertainment. Promoting the understanding that you cannot detect a history of mental illness from looks or behaviour alone is important in many respects, but in my opinion this programme has the power to trivialise both surviving mental illness, and the reality of living with a stigmatised condition.

The first point of trivialising surviving mental illness is a difficult one to articulate. Why do I believe it trivialises survival? Well because the programme is a game trying to work out if you tell certain things about people just by looking at them or talking to them. It highlights stereotypes and prejudices and is unlikely to take into account the hard work and likely years of recovery for the candidates who experienced mental illness, to get where they are now. It turns the perceived aesthetic visibility and stereotyped expectation of behaviour due to mental illness into a gameshow.

I think by now most people realise that mental illness is an invisible group of conditions, that it does not discriminate who experiences it, and that it is one of the most stigmatised group of conditions on the planet. I’m not sure, given the media released premise of the programme, how it will address these issues. From what it appears at this stage, the message is, ‘you can’t tell just by looking at someone whether or not they’ve experienced mental illness’ followed by ‘you can’t tell by talking to someone whether or not they’ve experienced mental illness’. Wow! Tell us something we didn’t already know. How the programme advances from this obvious fact is what will make or break it. Given Channel 4’s history of taking controversial topics and sensationalising them, I won’t expect too much.

The latter point of trivialising the reality of living with the baggage of stigmatised condition is an easier point to discuss. If the statistic, 1 in 4 of the population will experience mental illness in their lifetime is true (and there are suggestions it is not), then it is highly likely that interviewers will regularly and unknowingly quiz job candidates who are or have been, but do not appear to be, mentally ill. This tv show will present an unrealistic job situation, and while comments from some of the interviewers have highlighted if they were aware of a candidates past mental illness they would be reluctant to consider them for a job, it can be taken from the promotion of the show that interviewers and psychiatrists had difficulty identifying those with a history of mental illness based on looks or behaviour alone. But this simplistic ‘reality tv’ situation would only arise where a mental illness was not disclosed at interview, and most employers in an attempt to protect themselves from future tribunals, take every opportunity available to allow the candidates to declare if they have a disability or require additional support or adjustment.

In a realistic job situation an employer would be asking about gaps in the candidates CV, which highlight periods of unemployment. In people with a history of mental illness, these can be a give away to an employer. In research I undertook among employers 10 years ago, CV gaps were considered a warning flag even before inviting the candidate for interview. The obvious answer is for people with a history of mental illness to lie by filling gaps on their CV but that also comes with its own set of problems. At interview and beyond, it perpetuates the lie. And lying to get a job is a valid excuse for instant dismissal if found out. It will be interesting to see how the programme deals with this.

Of course, the programme includes some rather unique job candidates. According to the Guardian,one of the participants apparently continued to attend his day job while spending time under section in a psychiatric unit, leaving every morning in his work suit and returning in the evening at the end of his work day.  This presents a highly unique situation and instead of highlighting the destructive nature of mental illness, at a time when disabled people are already being demonised, it could trivialise the illness and its effects on life, especially among people who have been so seriously ill they have been sectioned. Suggesting they can get up and leave for work every morning while being held in a psychiatric unit involuntarily is in general highly unrealistic. Most people with severe and enduring mental illness have to take time away from work when they have an episode of illness. With a tabloid culture ready to attack the vulnerable, highlighting this man’s unique history on television could do more damage than good for people in acute phases of illness.

Non-disclosure of a pre-existing condition is also a potentially valid reason for instant dismissal. This presents a controversial situation. Should an employer become aware of a pre-existing disability while the employee is in work, they could consider this dishonesty a reason for dismissal. Obviously it’s not quite that straightforward, and there could be issues of discrimination if there were no problems with the worker or their work, but an employer has the right to expect their staff to be honest and non-disclosure could be considered dishonesty. This is a situation that has arisen time and time again, especially among people who have a history of mental illness and there is little defence for them.

Should a person with a pre-existing mental illness, recognised as a disability under the Equality Act 2010 not disclose it to their employer, and if their employer is not reasonably expected to be aware of such an illness (as is often the case with pre-existing invisible conditions) then they will not have the protections afforded them by legislation. Employers have a duty to make reasonable adjustments to the workplace or working conditions of a disabled employee should they require it. This doesn’t have to be expensive and for something like mental illness, as flexible working hours or offering a quiet space could be all that is required. If someone hasn’t disclosed their pre-existing disability to their employer then they have no statutory right to request adjustments. This is an issue that crops up time and time again when people expect an employer to provide an adjustment to their workplace without having previously discussed the reasons adjustment is necessary. The situation is less problematic should a person fall ill while already in work but as that was not the point of the programme, it is not discussed here.

The situations discussed above present the reality of the process of applying for jobs with any preexisting health problem, but the stigma associated with mental illness can make the process much harder and often less rewarding. I haven’t bothered to discuss the fear, insecurity and anxiety associated with applying for jobs when you have a history of mental illness, this is a hurdle that needs to be tackled long before the interview stage. A tv show that doesn’t highlight the reality could do the process an injustice. The producers are already celebrating their decision to make the programme tabloid like in an attempt to reach out to that demographic. I fear this could do more damage than good, trivialising reality in the name of entertainment.