This post follows on from my earlier posts Don’t Get Bitter Parts One and Two. In Part One, I discussed some reactions from the disabled community to the sudden widespread provision of accessibility.
I personally have benefited from the widespread move online hugely, and have chosen to stay positive about its availability now and hopeful for long-term change of societal attitudes. But I’ve also seen a lot of resentment around that people, organisations, companies and institutions are suddenly providing what had been previously denied to many of us.
Something I have not yet mentioned in this blog but which has been raised within my family is with regard specifically to home learning, since my parents had to fight a battle with the school and relevant authorities to get home tutoring provided for myself and my brothers, when we were school age and not healthy enough to attend. That’s a very painful part of our family’s history that’s left all of us scarred to some degree. It’s easy to get angry at the “they have to be in school!” attitude we received then when looking at how flexible and accommodating the educational system has been forced to become now.
Earlier today, I discovered through a support group the announcement of provision for a specialist NHS service for people facing long-term health issues as a result of getting the virus, and it’s also been met with bitterness. ME/CFS is closely linked with Post-Viral Fatigue Syndrome, and specialist services are a postcode lottery that vary in quality. There also still persists damaging attitudes about the condition within the healthcare system, such as it being “all in the mind”. (Which it isn’t!)
Although I’ve tried to stay positive during this crisis, moments like this are still challenging, and I get hurt and occasionally angry too. But we can turn our pain into action, grab the opportunity with both hands and use it to spread more awareness. The world is waking up to the difficulties faced by disabled people on a daily basis, and we need to keep that going in order to educate society as much as we possibly can.
Easy to say, but how?
If you’re reading this and you have never had a long-term disability or health problem, have never been on the receiving end of ableist or ignorant attitudes or had to fight for your rights, be thankful. Many people live in what is essentially lockdown, permanently, for years, often without ever knowing if they’ll ever be healthy enough to come out of it. Take a moment to consider that, and how it might feel, and then take some time to educate yourself. If you don’t know where to start, here are some ideas:
- Read the Spoon Theory, which is an analogy to describe what life is like for people with various chronic conditions that limit energy.
- Contact someone you know who’s disabled, and ask them what they would like more people to know about what life is like for them. (Don’t put them on the spot unexpectedly! Ask them to take some time over it and get back to you when they’re ready. A written message would probably be preferable for most.)
- If you run any kind of company, organisation, institution etc which has had to move online, open a discussion with those for whom this has been a blessing and what they would welcome in a post-pandemic future.
For those of us who have struggled with these issues or are currently struggling, making change happen doesn’t necessarily require investing lots of energy we probably don’t have! We can all contribute in small, practical ways. Pick one thing (or more than one if you’re able) on this list.
- Share the Spoon Theory on your social media, with a personal addition if you’re able.
- Write down a short statement about how it feels to have your condition, and send it to someone you know or post it on your social media. Keep it to hand for any future time you may need it.
- Contact the organiser(s) of anything you’ve only been able to access because of lockdown, tell then why it’s been good for you and ask that they consider remaining more accessible in the future. It doesn’t have to be long or detailed, as long as they know there’s a demand.
- Write to your MP about your experience with healthcare services, benefits, and/or any other relevant issues.
If you can think of anything I’ve missed off these lists, please do share in the comments!
One of the contributing factors to my writing this post was discovering this morning that places of worship are allowed to open today, followed by my pastor announcing that our online services would continue when they begin physical services again. I’m currently drafting an email to him explaining my circumstances, expressing my support for this and for physical services to continue being livestreamed after lockdown.