How about we listen to the disabled community: we’ve been training for this our whole lives.
Updated: Mar 19
As a disabled touring artist, me and my band-mates/carers have had our fair share of disasters but the new coronavirus pandemic has taken it to a whole new level. Like many bands, it has destroyed our immediate future and there is an increasing uncertainty in what lies ahead. Last week our 6-week European tour was dramatically cut short only 2 weeks in. As the borders suddenly began shutting, we faced a 20-hour van race back home to Newcastle-Upon-Tyne, avoiding as much contact with people as physically possible. It is tragic for us, but as I scroll social media for updates and see how many others face the same gloomy predicament, it occurs to me how irrationally stable I feel about the situation. Yes - I hate to be out of work, to disappoint our fans and to have a tour, that took months of planning, grind to a halt (and let’s not even get started on the grim financial implications). But I don’t feel quite the same panic as everyone else. And it’s something that I see across the disabled community: we are just quietly carrying on as normal.
As the rest of the world goes into crisis about how they’ll cope with cancelling social occasions, working from home, living frugally for a while as they self-isolate themselves, the disabled community is perhaps more resilient. We suffer set-backs and disappointment in our lives often on a daily basis, with a wide array of challenges: having to take time off work; unexpectedly having to muster up money for new mobility aids with no other option available; often living on very low income and somehow having to make it all work. Living with a chronic illness and disabilities means we have to constantly adapt and learn to be positive and productive in the face of chaos. We just carry on. It is business as usual for us.
I was diagnosed with severe arthritis when I was 15 and then with EDS at 21, and I have been a wheelchair user since. I take immune suppressant injections, which have led to a number of serious illnesses due to my compromised immune system. Let me be clear, this is not a pity party. I don’t feel sad about any of this. If anything, these experiences have given me super powers. Like anyone on immune suppressants with chronic illnesses/disabilities, we know how to take care of ourselves better than most. But we also know how to empathise and support others in our community. We survive months of bed rest and hospitalisations whilst managing to keep our heads above water. We got this. If anything, non-disabled buddies who are really feeling the uncertainty, stress and anxiety might now need our help and skills on how to cope.
In the current climate us immuno-suppressed warriors, along with older people, are significantly more at risk and it’s something which all people need to recognise. Look out for your chronically ill/disabled family, friends and acquaintances. Listen carefully when we ask for help and make sure you’re aware of what not to do if you’re visiting someone with a compromised immune system.
But don’t pity, don't patronise, don't ostracise us. We’re probably the most resilient people you know right now and we can teach you a thing or two on how to weather this storm. We’re all in this together so let’s be kind and build some bridges to last into the future.