I thought this week, as it is Mental Health Awareness Week, I should highlight the mental health issues that reside in a community often pushed to the sidelines, a community all struggling to survive on a daily basis, the parents and children that make up the beautiful disabled community.
I am such a parent. My daughter was born twelve years ago with spina bifida but my mental illness was born many years prior to that. From an early age, thanks to a combination of intolerable bullying, gruff inhumane GPs and suffocating parental love, the seeds of my lifelong mental downfall were planted.
When my daughter was born, I was elated, instantly in love and proud of my beautiful wife. However, being a parent of a child with additional needs in society today is damn hard work both physically and emotionally. The stats on disability speak for themselves, the numbers growing year on year. I am not saying that my daughter is at fault for the fact that my mental health has spiralled in the last few years, no, I am saying that all the lack of help, guidance and support is. If every family like ours was supported emotionally through a situation that is of no fault of their own, then the prowling presence of the black dog would be ushered away.
Support for parents of disabled children is woeful and a huge contributory fact to parents mental health. Statistics show the problem is increasing year on year with no signs of slowing down. For my part, I feel every day that if I am not holding off the effects of mental illness, I am feeling it bloat and swell to sadly destructive proportions. This is not an overreaction, it is fact. Worries around your child’s health, the costs of essential equipment, keeping up the damn bills and more all worm their way into your psyche, taking advantage of the open wound in your bottomed out emotions.
For the uninformed around disability parenting, let me tell you the effects social isolation and health worries have bestowed upon me. I have to, every day, convince myself that I am a good man. I mean every minute, second, microsecond, I am convinced utterly of my own unlikeability, my own self-loathing, that everyone just tolerates me, that I am the poison on the arrowhead shooting through this community. This is what the crushing effects of a social model of disability does to a parent. It takes all you have and turns it into dangerous, dark thoughts, grinds you down mentally to a pulp and offers little in the way of help. Ableism and ignorance put me through the grinder and spat me out with diagnosed bipolar, severe anxiety and body dysmorphia.
The stats on support for people like me, like us are truly unbelievable. Cuts to services that could save lives are abhorrent. I am one of the lucky ones, I’m still here, but how many have fallen through the net? I myself was fortunately pulled back from the edge by my family. I remember hitting the absolute bottom of my bipolar hell, the raging electricity of anxiety, the crushing headache and incessant voices of doom bellowing “die!” “your a failure to everyone!” “you are a burden to everyone, especially your friends” I remember being curled into a ball on the sofa, slowly giving in to these thoughts. Family and friends are the most important resource at times like this, people who love the bones of you will catch you when and if you fall.
If I haven’t given you enough reason to believe that society is cruel to families like ours, here’s a statistic that gives further reasoning to our mental distress. The average income for families with disabled children is just over £15,000, which is 25% below the UK mean income. We forever worry about money, after all it’s not many households that have to spend thousands of pounds regularly on equipment just to keep their children either alive or independent. The annual cost of bringing up our children is three times greater than that of other families. Don’t think so? Take a look at the facts, and then educate yourself on the criminal poverty issue which if doesn’t contribute to the howl of the black dog, then I don’t know what does.
Mental health for us is a constant. For those lucky enough to still be with our partners, we count our blessings. Both myself and my wife suffer from mental illness, but we are still together with our daughter being the glue that binds us. Our inner demons will never leave us, but if support and the system of care was both well financed and made fit for purpose, then maybe the bark would be a growl and trained to be a sniffle. Disability is beautiful, our children glorious and we dream of a society free from intolerance that would allow them and us to just exist along with everyone else. The fight for change, rights and access are the mental weights slowly pulling our heads under the waves.
I am wary of myself every day. As the brilliant Matt Haig put it, I am now my own “despair detective” watching myself, checking my mood chart, making sure i consume my socially enforced 185mg meds. I dream of a time none of us need these self imposed guardians, these detectives of despair. I dream of the day that my daughter can access all she needs, go where she wants without stereotype or assistance. I dream of the day services are there readily for parents like us living 24 hour care for £64 a week and I dream that for families like mine there is silence, that the black dog is finally put down.
If I can offer anything as a way of support to other parents, it is this. There is a vast community of us, huge, that is to be found online, in community centres, in hospital waiting rooms, even in the coffee shops. Use us, seek us out, join us, share your stories, then we can slowly build our own network of mental care...by listening and learning.