I retired this blog over a year ago for a few good reasons. I’m unretiring it now for one even better. So why did I stop writing about life and living with a disability? Here’s why:
We started a game accessibility and technology website around the time I stopped writing here. I have limited time and starting a game accessibility and technology website required all of it and I told myself that I wanted to focus on more positive things, not the black hole that living with a disability on benefits in the UK is and as technophiles and gamers, we figured investing in our passions was the right way to go. All of that is true.
Tomb Raider: Lara Croft
I never have enough time, too much of my life is gobbled up by being so sick I can’t do anything and focusing on the positive is a better strategy than dwelling on the frustrations and depressing facets of life. But neither of those required retiring this blog. I could find a few minutes once in a while to write a good piece and retaining a sense of balance between positive and negative seem a lot healthier than fixating on the positive and completely ignoring whatever doesn’t fit into that box. To be honest, I was a little terrified of entering the world of gaming journalism as a woman in a wheelchair living on benefits.
I am not commenting on the gaming industry here, but solely expressing my personal state of mind. To be clear, pretty much all my Steam, XBLA, PSN and mmo friends lists are filled with guys under forty who have been nothing but helpful, amazing and extremely supportive.They’ve carried me through hundreds of hours of co-op, multiplayer matches and raids and I’ve had seizures, have required an extended break because I dislocated my shoulder getting up to go to the bathroom and have greeted an ambulance crew arriving whilst still on vent still raiding even though I needed an adrenaline shot to reboot my breathing ten minutes before their arrival. I needed a good distraction to keep me calm and they happily provided it without fail. Women have started quite a few dialogues lately about what it’s like for them working in the gaming industry and that’s great, but I worry about all the good guys who aren’t being talked about.
There’s a difference between having friends and putting yourself a bit more in the public eye. Whether a realistic fear or not, whether justified or not, entering the world of gaming journalism as a woman, not a girl, in a wheelchair to boot, was daunting and I didn’t have the courage to provide potential ammunition to the hoard of angry internet commenters who are constantly looking for a new target.
I didn’t want to be so personal in public. It’s one thing writing to the anonymous 11 strangers who stop by on any given day, hoping that something I say helps one of them or makes one of them either feel a bit better or at least a bit less alone on their own journey. It is something else entirely when the audience grows and starts talking to me.
On good days, I struggle with the good comments. Being admired, wished well, told I’m an inspiration is uncomfortable territory. I’m the kind of person who brushes off praise and compliments. The psychologist who diagnosed me with depression when I was 12 said one useful thing to me – when someone pays you a compliment, whether you think its justified or not, smile and say thank you and leave it at that. It was the best social skill I ever learned. Smile, “thank you”, silence. I’m often told that I’m an inspiration. Nobody really wants to be ‘an inspiration’, it lies a bit too close to pity for comfort. I lead a pretty dreary life, I don’t inspire, most of the time I sit in a corner and complain how much pain I’m in and how nothing ever really helps. That’s not inspirational. Medical queries are a quagmire.Negative comments are difficult to deal with. Is it valid criticism? Should I pay attention or even read it?
The more I wrote, the more people started to read what I wrote. I got a little stage fright. I think I’m over it or at least ready to get over that now.
I was worried about the impact of what I say might have on my benefits and support. I have had quite a few traumatic experiences in my life, but none have been as persistent, stressful and downright depressing as dealing with the benefit and care system in this country.
I have been accused of faking it, more than once, I have been required to strip naked, shower and get dressed whilst being observed by no less than three or four professionals at the time, more than once. I have been reported for parental neglect because my daughter subluxed her ankle when she was learning how to walk in front of a Continuous Health Care assessor who felt that she was in more pain than a baby should be. Why yes, I totally agree.Said professional, also didn’t notice my husband giving her a snack, a meal and a bottle during her multiple hour visit and yes, said professional also felt that we were not entitled to CHC care and should be reassessed immediately.
Other people sit in judgement of my life, my health, my disability, every penny I have and in many ways, we live in constant doubt and fear, wondering when someone who knows nothing about us, will decide we weren’t entitled to housing benefit (why hello, over occupancy tax), income support (here comes the annual carer assessment that refuses to acknowledge that a year old with EDS, Coeliacs and asthma needs more care than the average 2-year-old), DLA (it took years to receive a lifetime high rate DLA award which is now being stripped away across the country and we will have to start proving from scratch again that yes, multiple interacting chronic incurable health conditions are actually pretty disabling) etc.
We are luckier than most. We have a house, even though we’ve lived here for 16 months without disability adaptions, it’s a house with a roof and doors and central heating and I am grateful for it. I do have DLA and because of it, we do have a car now that will transport my electric wheelchair. I have an electric wheelchair, others do not. I have 44 hours a week of direct payments for parental support that we use to employ a weekly cleaner, a gardener to mow the massive lawn that came with the house the council OT recommended and assigned to us, nursery for 12 hours a week and a recent addition, a carer/nanny to help the little one for 19 hours a week and that’s that budget spent. I have a husband who also doubles up as father and carer-for-two, despite suffering (and yes, suffering is most definitely the write word here) from debilitating chronic cluster headaches, chronic pain due to past motorcycle accidents, a few other neurological issues persisting after a traumatic brain injury when his helmet malfunctioned and oh yes, Aspergers which we never mention or talk about because a) he is high functioning and so of course it’s irrelevant and b) it’s not the kind of sociably acceptable condition that his ‘headaches’ are.
On benefits, our livelihood is determined by other people who sit in judgement. Every day is filled with phone calls and meetings and appointments with people who are all under pressure to cut costs. In the past, benefits were hard enough, every conversation was about a judgement call and the overwhelming question in the air was always “Do we ‘qualify’?”. Now, with the added pressure on council and NHS staff, that question has become “Is there any way we can make it so you don’t qualify? Or, if you’re lucky, what is the smallest level of support we can provide you with?”
I’m tired of being afraid. Afraid of loosing our meagre monthly income, afraid of loosing my wheelchair that took five years of being virtually housebound to get, afraid of loosing our car and going back to relying on the headache that is public transport. Afraid of losing the little support we have to take care of a lovely but sick and very active toddler. Afraid of being judged and criticised and attacked because “you don’t look sick”.
I initially started this blog because I was asked so many times “what’s it like? The nature of the question has changed over the years: “What’s it like to have a migraine?”, “What’s it like to stop breathing?”, “What’s it like to have a seizure?”, “What’s it like to dislocate a joint?”, “What’s it like to use a wheelchair?”, “What’s it like to have a daughter with a disability?”, “What it’s like to play World of Warcraft with dislocating joints?” At first, I tried to answer those with short snippets from my life and in particular my life with chronic illness and disability. I’ve written about a lot of my life, I’ve also left out a lot, some things are just too depressing to dwell on. And now I’m ready to write some more. Those eleven people who landed at this URL on any given day, you can come back now. Also, the six hundred that followed.
To sin by silence when they should protest makes cowards of men. (Abraham Lincoln)
I guess there is something to be said about wanting to make someone else feel better and if I was comfortable writing for 11 people a day in the hopes that just one will tap away with a smile or one happier thought, I should be ecstatic that the odds are even bigger of that happening when more visitors stop by. So visitors, come on by. And leave comments, also I’m on twitter @liliellis