How Medicine Treats Disabled Trans People

In an article for SpoonieHacker, I talked about how medicine treats disabled trans people, and this conversation is something everyone can benefit from reading.

World Mental Health Day

CN: mental illness, police, suicide, abuse

Mental Health is something I’ve been mulling over a lot recently. My own, and other people’s. It’s particularly relevant to the trans community, not because being trans is actually a mental illness, they have proved it isn’t. But because incidence of mental ill health is common in the trans community for the obvious reasons that we have less social support, are more likely to be abused and traumatised, and experience homelessness and other life stresses that can cause or exacerbate mental health problems.

My own health has been shaky this past couple of years. The stress of myself and my partner going through transition; our changing relationships with a lesbian community we were very much involved with; the discovery that once trusted friends are deeply transphobic; the experience that coming out as trans has fundamentally altered how people view me professionally and severely derailed my career; the backing off people have done as they’ve seen my increased need for support and haven’t necessarily felt up to the job. All these have played their part.

Alongside this is complex trauma that goes way back: like many trans children, and other children who are obviously different, I had a really bad start in life. And I’m autistic, a difference I share with many trans people, and one that also tends to marginalise you and leave you prey to abusers.

Because my particular mental health issues do not have easy medical fixes and are poorly understood, I’ve tended to avoid doctors for my mental health and turned to therapists, who have substantially helped me. Being a therapist myself, I’ve had access to supportive environments most people can only dream of, but I’ve often had to keep the extent of my inner turmoil close to my chest in a world that sees mental health in very “us and them” terms.

Perhaps that’s why I felt a chill in the air when I came out as trans and found myself experiencing pretty blatant discrimination in multiple professional arenas. Because many associate trans people with mental illness, and because mental illness carries a stigma.

And here’s the thing; one of the biggest strains of all on mentally ill people is the effort it takes to hide our distress because the world refuses to accept, support and hold it.

Care in the community?

For the last few weeks I’ve been dealing with a young woman in my street becoming increasingly paranoid and psychotic.

A regular round of police and ambulances, both of which cost and neither of which help. I’ve had to intervene several times in midnight screaming matches at hapless and hopeless public servants or ill equipped friends and relatives.

I have a knack for calming her and she now sees me as a safe person so is knocking on the door regularly and popping notes through the door which are alarming and bizarre. There is a grain of sense in everything, of course, and a true sad story going back a long way. Like most ill people her mind isn’t disturbed simply from a chemical imbalance, faulty genes or poor personal choices but years of trauma for which she’s had no support.

While I am in no doubt that she currently needs medication and probably hospitalisation for her psychosis, kindness and listening work a kind of magic on her. If only she had been listened to and supported more during her traumatic childhood maybe things would be different now. But now, helping her is not so easy.

So often I find that people who show resilience to life’s trials actually had support from somewhere. It’s that which makes the difference. Humans really cannot function without other humans supporting them, whatever our individualistic society likes to think. But we withdraw support from others quite quickly when things get tricky, scared that people will “take too much” and oblivious to the fact that if we act generously, as if we have an abundance of time and care, people often feel resourced and find their own resilience again, whereas if we keep pushing them away, well they keep experiencing a deficit and their need will be never ending.

Of course, there are some for whom the deficit they have had from others over decades means we may never be able to make up for it. This neighbour, and many in the trans community who have turned to me for help are examples of the enormous social deficit some people experience.

In the absence of social structures designed to meet need with genuine care, we spend a fortune on substandard care and have the police standing as care in the community. An abundance of people whose job it is to listen could obliterate the loneliness, isolation and marginalisation that lead to people falling prey to harmful and abusive people or to self-soothing behaviours that in the end make things worse, such as substance misuse.

Meanwhile our prisons are full of mentally ill people, and a large proportion of trauma and deaths at the hands of police happen to mentally ill and disabled people. Police and prisons are an expensive and entirely unhelpful resource for what is a healthcare and social issue.

More support, early intervention and warm, person centred care for those who need it, would save us millions and more importantly make our communities happier places for all.

Understanding resilience comes through vulnerability, not strength

This requires a fundamental philosophical shift: Support makes people and communities more resilient. Shouldering too much without help can make you crumble. The idea that “mollycoddling” makes people weak is a popular but dangerous myth.

So often people think they’ve not had support and have “got through” on their own but some support is invisible – sometimes it’s generally socially supportive attitudes to your circumstance, a difficulty that’s understood or portrayed favourably in the media rather than one that’s taboo or dealt with badly.

As primates, we really do very badly on our own, we are so fundamentally social. And as social creatures, evolved to collaborate and work collectively, our capacity for mutual support is what makes us awesome. Crowning achievements like the NHS show just what we can be, and chipping away at the edges of this service until we have people who need inpatient care sleeping in police cells and police acting as expensive and untrained care workers, well this does not just affect the individuals who are suffering, it puts stresses on whole communities and increases the cost of police and prisons. In effect it is the very opposite of the old adage “a stitch in time saves nine”. Saving money on mental health can work out very expensive indeed.

Withholding our care does not toughen people up, in fact quite the reverse. Yes, many people with mental ill health need medicine, and many need walks in the woods and exercise as certain internet memes insist.

But what we all need most is human support and empathy, and there is no substitute for this. That cannot be found in a forest or a bottle, but it is nevertheless an abundant resource.

 

Hidden disability and its losses

When I look at the way disabled people are being persecuted to their deaths in my own exceptionally wealthy country, I wonder if disability is getting left out of our discussions on social justice. When we reel off our well rehearsed lists of intersecting oppressions, disability is often missing. This has led me to reflect on the impact of my own disability, and how much I discount it (and hide it).

Here’s my list, which feels pretty scary to put out there – ME/CFS, depression, autism, ADD, attachment disorder, PTSD, dissociation. Some of these have been medically diagnosed, and some realised through non-diagnostic psychological therapy. I may disagree with the construction of some of these labels, I certainly oppose any label with “disorder” in it, but I still feel their weight.

I often spend time reflecting how lucky I am. I think it’s important, reflecting on privilege, being aware of your advantages. I grew up middle class, well educated. I was white. But home was not remotely safe, and school was where I was bullied for being different – traumatised, aspie/ADD, trans, and poorer, more neglected and scruffier than the other kids in my posh school.

Life continued with its benefits and losses. Family trauma led to me leaving home at 17 and becoming homeless, living on the breadline well into my 20s and becoming dependent on substances to cope. My good education meant that I was eventually able to get myself to university as a mature student, where I learned a lot and had access to free therapy. My poor health meant I was unable to complete the degree, and to this day (nearly 2 decades later) have never earned enough to start paying back my student loans. But having been to university still broadened my horizons.

I have ended up with a complicated relationship with privilege, where I have often discounted my own struggles because there are always people much worse off. I’m sort-of posh and sort-of university educated, but my mental and physical health has weighed pretty heavily in counterbalance to those privileges. It has created a wealth gap that we all just take for granted. We expect disabled people to have to struggle financially.

Hidden disability is ignored and dismissed and often I’ve struggled to get people to believe it’s there. Because it is inextricably bound up with trauma, it’s also too easy for people to say it’s “all in the mind”. Well, some of it really is neurological, but saying “all in the mind” makes it sound like a choice, and then people don’t have to take it into account. People are often quick to assume you’re shirking or lazy or melodramatic or manipulative, because they simply cannot see the pain or difficulty you’re having, and they require a proof that does not exist.

It doesn’t help that like most army brats, I was raised to be a brave little soldier, and showing my vulnerability is no easy task.

I have rarely been able to work full time, or managed to continue in employment without chunks of time off to recuperate. I’m in one of those off-times just now. Being on the cusp of disability, I’ve been able to claim sickness benefits for short periods, but always under duress to get back on my feet. The walking wounded, I always feel thankful for how relatively unscathed I am, but at the same time sometimes I just want someone to let me ride on the stretcher for a bit.

The underlying problem, I am beginning to realise, is that our current culture trains us to see ourselves, and our problems, in competition with each other. Some folks take the “my problem is bigger” approach: “Why should I care about your broken ankle when I have a broken leg?” “I bet it’s not broken really, it’s just twisted” . . . “and anyway, mine was a really, really bad break”. But as a counsellor, I actually see far more of the flipside of this – people discounting even the most horrendous of their own problems because there is always, inevitably, somebody worse off. This is what I tend to be guilty of. In doing this, people are often avoiding the discomfort of being vulnerable. It’s called not dealing with your own shit, and it isn’t as virtuous as it appears. But it’s entirely understandable – we believe somehow we can make a bargain with our minds to minimise our pain through a process of denial, as if “positivity” is all about pretending.

So, here’s the thing. I am a very lucky person, and I know that. I grew up with enough to eat, with the enormous benefit of being white. With praise for my “masculine” qualities, with intelligence, and the ability to articulate myself, and the benefit of a good education. I am disabled but I am also brimming with able privilege compared to many.

But I increasingly suspect that in order to live in a compassionate world, we need to learn to give due consideration to every stubbed toe – we should learn to stop measuring other’s distress against our own and be able to wholeheartedly empathise with how it feels to suffer migraines and bad backs and brain fog and depression and eczema and IBS and asthma and ingrown toenails and griefs and traumas both large and small. I will support you to grieve for your broken iPhone and not compare that to my lost family, because no two problems are ever comparable, and all feelings matter. Being able to tune in to each others differing experiences is never wasted.

I am slowly learning not to dismiss my own pain and trauma in the face of the overwhelming suffering and oppression I see around me. It makes me a more compassionate person when I learn to offer myself that same compassion. Lately, my physical health and depression have been so bad there have been lots of days when I have wondered if I can carry on working or even functioning. There are days when I have cried out for a carer, knowing full well there really is nobody out there better off who can swoop down and lift my burden off me. I tell myself I have to be strong, but the reality is being strong is exactly what gets us into this pickle.

We are none of us strong, we are all of us vulnerable, and often there are difficulties we don’t see in the faces of those who we set up as “the lucky ones”. I will continue to own my privilege, as we all must, but I also need to learn to own my vulnerabilities, and I am increasingly realising the importance of that. Compassion is not a commodity, it isn’t in short supply, or more valuable if we ration it. Capitalist, austerity-based models of caring do not fit our hearts. We can afford to be as generous as we possibly can be towards our own, and each other’s, suffering.