As a deaf woman, I’ve been failed by the mental health system

This story was written by Sammy, a St Andrew's patient and originally featured in Metro.

Imagine being in the middle of a complex mental health crisis. 

You can’t really describe what you’re going through, you feel like there’s no hope left and that the only way out is to end it all. Now imagine not being able to tell anyone how you’re feeling. 

I’m 26 and deaf, and for much of my life this has been my experience – one which eventually led to me being sectioned. I believe that my mental health problems are linked to my early experiences of growing up as a deaf child and some traumatic events I endured when young.

School was also really difficult; I was bullied and relentlessly criticised about my weight, and my grandfather passed away around this time too. I felt like I had nobody to talk to and couldn’t communicate to people how I was feeling, which made everything so much harder. 

To add to that, there was a real lack of support at the school I went to, which was then shut down by the Care Quality Commission (CQC) which found ‘shocking examples of institutionalised failings and abuse’. 

I didn’t have the confidence to use British Sign Language (BSL) fully until I was about 19. Nobody around me could sign, which contributed to the lack of communication I’ve faced throughout my life. This meant that when my mental health problems started, I wasn’t able to ask for help or express my emotions. I desperately needed a way to cope with what was going on in my mind – the eating disorder I had developed and the relentlessly strong feelings of wanting to hurt myself or end my life. 

I just wanted to disappear and the only solution I could think of was to run away. My carers would file missing persons reports and spend hours looking for me, before I was picked up by the police. 

After many varying diagnoses, I was eventually diagnosed with borderline personality disorder in 2018 – a mental health condition which causes significant distress, dizzying ups and downs, impulsiveness, and emotional instability.  

I spent years in and out of hospital, living in various care homes, and occasionally on the street.  At the age of 24, I was sent to a psychiatric intensive care unit, which was only intended for short-term stays, and while I was there, my condition got worse. 

Nobody at the unit knew how to sign and they weren’t equipped to support deaf people. I felt confused and lonely. I would experience feelings of paranoia, thinking that people were talking about me and this directly led to suicidal feelings and self-harm. 

Staff would try to write things down for me, but I found it so difficult expressing myself on paper – especially when my emotions were so intense and frightening.  Occasionally I did have access to a signer, but not very often. So for basic, everyday things, like needing the toilet, wanting to get something to eat or wanting to watch TV, I had to try to and communicate in some other way. It was so difficult dealing with it on a day-to-day basis. 

When things took a really dark turn, I was formally sectioned under the Mental Health Act for my own safety.  At the time, I didn’t really understand what was happening to me. All I knew was that the independence that I did have was being taken away. I no longer felt able to make my own decisions. 

It’s not uncommon among deaf people to experience mental health problems caused by a lack of information – which then results in frustration and anger. In fact, twice as many deaf people will experience a mental health problem in their life, compared to hearing people. Eighteen months ago, after years of being moved from hospital to hospital, with no specialist deaf support, I was transferred to a secure unit in Northampton which focuses on providing deaf mental health services. 

They have deaf staff, regular interpreters, a psychiatrist who specifically looks after deaf people, and a programme that fully supports deaf culture. 

My mum had to fight really hard to get me there because it was so specialist, funding was scarce and places were strictly limited. When I arrived, I was incredibly anxious, but seeing how well the staff knew BSL immediately made me feel relieved. 

I was still angry and wanted to self-harm to ease my pain, but being able to talk about about the trauma I experienced in my childhood – properly, and for the first time – meant I was able to gain control of my emotions. 

It’s now been a long time since I’ve had self-harming thoughts, and that’s a big improvement for me. I’ve finally been given hope – but there are still challenges and I’ve realised how unfair the system is. 

As an example, there’s a brilliant ward at my unit for deaf men, but there is no equivalent service for deaf women, meaning I am still on a ward with hearing patients. 

To put this further into perspective, there are currently four providers of psychiatric wards for deaf men in the country – for women, there’s nothing. While my therapy sessions are delivered by somebody who signs, they take much longer to complete because they were developed primarily for hearing people. 

If such programmes could be developed with all deaf people in mind from the very start, we’d be able to engage and complete these treatments in the same time as hearing people do.   And while I have constant access to BSL interpreters, I’m still in a primarily hearing environment. I see other patients laughing and joking, but I can’t interact with them – it’s like being in a foreign country where I can’t speak the language. 

Sometimes, when I’m walking around the grounds, I’ll bump into one of the patients from the deaf men’s ward. It’s such a big deal for me to be able to just chat to someone who can understand me, without having to rely on a translator.  It’s these little things that hearing people often take for granted. 

While I’m definitely in the best place I’ve been since I started experiencing mental health problems, I find it frustrating knowing that the mental health system is stacked against me.  If deaf women were treated equally by commissioners of mental health services, I could be thriving and even living in the community by now. 

Just because I have a disability as well as a mental health problem it doesn’t mean I should be destined to spend my entire life in hospital.  I’m now campaigning for more awareness for deaf people, especially women, so that we can get the same level of support and funding as everyone else.  With tailored programmes, deaf women like me can start to hope for a more independent and fulfilling life. 

I might struggle to communicate, but now, more than ever, my voice needs to be heard. 

Sammy has launched a petition to campaign for equal access to specialist secure mental health services for deaf women.