Exclusion Today!

Banner that highlights eating disorders – text includes Anorexia Nervosa, eating disorders, treatment, resistance.

My friend told me last week, in fact she told the world on the Disability Access Wall of Shame page, that she had been admitted to hospital for mental health reasons 131 times. My friend has an eating disorder. Eating disorders are complex. They can be caused by any number of factors that include genetic vulnerability, psychological factors and social cultural influences. Genetic vulnerability refers to appetite, metabolism or reward and pleasure responses among many things. Psychological factors include, but are not limited to, personality disorders, core low self-esteem and obsessive compulsive disorders. Socio-cultural issues refer to things like the Western view of thinness and beauty and stereo typical media portrayals. Whatever the reason for an individuals eating disorder, be in no doubt that such disorders are devastating and require almost ongoing treatment and diligence.  http://www.nedc.com.au/risk-factors

My friend is a great advocate. On Facebook she talks openly about her eating disorder. She tries to create awareness as much as she can . She is particularly loath of fad diets, feeling that they contribute to the stereotypical body image. For her the best diet is simply one where people are eating healthily and adequately. I have learnt much from her posts on Facebook. Even though she is a strong advocate for people with eating disorders she sometimes has relapses. In many ways Facebook is a godsend for her because she is able speak openly about the challenges she is confronting and get enormous support from her many friends.

Apart from fighting her eating disorder my friend is also deaf. She does not sign and relies on what hearing she has and lip-reading. As stated in the introduction, my friend has had 131 separate admissions to hospital to tackle her eating disorder. Her story is harrowing, not only because eating disorders are so devastating, but because the mental health system in Australia simply is not set up to cater for people with any type of hearing loss or disability that impacts on communication.

In my friends own words, the communication issues are very frightening and real. Said my friend, “They never, EVER offered me someone to help me understand what was being said at ward rounds, at the doctor visits or otherwise. I do not sign but am profoundly deaf in both ears. They refused to get someone to write what was being said for me.” One hundred and thirty one times my friends condition has led her to be admitted to what she calls the locked psych ward . Imagine that, locked in a ward, in pain and a great deal of mental distress and no one will make an effort to do something as simple as write down what people are saying. Meanwhile doctors and ward personnel and speaking with concerned and serious looks on their faces – Wouldn’t you want to know what is going on?  This is happening everyday somewhere in Australia.

Then of course when you are very ill you are often required to stay in hospital for lengthy periods. Psych wards are particularly strict. They have to ensure that the patient does not harm themselves in anyway. My friend talks about this in detail, “They even, a few times, tried to take my hearing aids away because they said ‘they have small parts, they are dangerous, you might swallow the batteries”   Naturally for the deaf person communication is a challenge in this sort of setting. The patient who is deaf needs every bit of help that they can get. For lip-reading, residual hearing can be of great benefit. It allows the person who is deaf to be able to pick up vowel sounds and hence understand the difference between many words. Imagine being in a locked psych ward where doctors are already refusing to write for you or provide assistance for you to understand what people are saying. Imagine how you would feel that they want to take away the one thing that can at least help you to understand something, your hearing aids. How horrifying might this be?

But it did not stop there. “They refused to allow me to use my FM system to hear better (the cords are dangerous that are used to recharge it although they could charge those in the treatment room where they allow other patients to charge things.)”  OK I understand that in a psych ward the doctor wishes to minimise risk as much as possible. But what they are doing here is effectively cutting my friend off from the world. They wont adjust their communication. They are taking away the only technology that is giving my friend any semblance of access to her treatment or to communicate with people in the ward. It is not just discriminatory it is tantamount to torture and exclusion. Yet the Doctors and ward personnel seem to be unaware as to what they are doing. “They refused to take on board anything I asked them in terms of facing me, speaking clearly, not covering their mouths etc. It was HARD. Especially when you are extremely unwell and you don’t have anyone to advocate for you.”

But the exclusion is not limited to just the communication with Doctors and ward personnel. “They refused to allow me concessions like being able to use my phone to text people (everyone else has access to the ward payphone 24/7)” Apparently it is common practice to take mobile phones away from patients because the psych ward cannot monitor what the patient is communicating.  Of course a public payphone is no solution for the patient who is deaf. Then of course there is often no access to the television due to the lack of captioning. No access to peers or group sessions because adjustments for communication are not made. Arguably admission to a psych ward is so socially isolating for the deaf person that it might actually do more harm than good. Recently my friend had a cochlear implant. Pointedly she states, “I am scared to go back, to be honest, now that I have a cochlear implant because I can’t see them letting me charge the parts for that every night.”

This is mental health support for the people who are deaf in Australia today. No awareness, no communication and extreme isolation. It is not only horrific but it is also potentially doing more harm than good. There is much that needs to be done to improve mental health care, and indeed all health care, for patients who are deaf.  In recognition of the extreme challenges people who are deaf face in accessing mental health support, Deaf Victoria and its partners will be hosting a mental health conference, Let’s Talk About it – Mental health and deaf people – on the 16th and 17th November 2015. It can not come soon enough.

What has happened and continues to happen to my friend is simply horrific. Drastic changes are needed.

5 thoughts on “Exclusion Today!

  1. Thank you SO much for writing this, Gary.
    I wanted to add something – quite a number of times I have been restrained, by 2-point restraints on that ward. Meaning I do not have the use of my hands AT ALL. Luckily I speak – but I always wondered, if I relied on signing – how on earth would I communicate? It is very frightening.

    • I don’t believe education is the answer. Changes to laws make it mandatory. THEN the education comes into play…

  2. Your wonderful article highlights massive shortcomings in this “first world” system that desperately needs changing. Someone needs to get the ball rolling and actually implement legal changes to the acts governing how patient’s are treated. I’m not sure about the finer print details but I’m extremely motivated to help get the ball rolling, as the lady you’re referring to in this article is a personal friend of mine since primary school and one amazing lady. If her experiences can articulate change for future patients let’s do it! Let’s get this happening NOW. Even if it’s raising funds to fly her down to Victoria to the conference in November to be able to tell her story, or by starting an online petition to push for the changes I’d love to help!

  3. hi, I’d sell tickets to raffle in this town to fundraise for this gorgeous lady to come to the conference. Think it’s so crucial for this to happen. We need to stand by her … I think or believe that naming the place so that we can share our collective concern – maybe an open letter that outlines what we want to see happening. I don’t give any 2c worth of crap about their process. What they are doing is justifiable is not by us. The medical authority needs a massive input to make positive changes. They kept me in hospital over a kidney stone for 7 days knowing it was impossible to pass the stone – did they share? No. They kept me drugged and as much as I implored for information they didn’t give it. So the final day I lost it! Scared everyone shitless and they transported to Tamworth … They were dealing when I sent a four page complaint. At Tammworth They provided me with an interp and I found out heaps of stuff that the specialist shuddered at my experience, he gave me a big discount (lol). There are beautiful people but the rest need a good ear bashing to realise what they’re doing is very very wrong. “Enuff” is my motto! Craig

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