Experiences of impairment during coronavirus: Exclusion, Inclusion and unheard voices

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I have now become an expert in marking time.  And forgetting about time.  And cherishing time.  And worrying about time.

I have never felt closer to the world, nor more disconnected from it.  

Never more certain of my convictions, yet never wavered as much.

Always completely grateful, yet never more frustrated.

Experienced such a feeling of powerlessness, yet never felt more able to be powerful.

Seldom more worried about the state of the world, yet optimistic about the future.

All of this is just in one day.  Such is the rollercoaster of our present times.  Yet I am still here.  As I write this, the long summer days have retreated, and the raindrops hang on the garden furniture.  There is a sense of preparation, of anticipation.  Having done what we can to bed ourselves in and to hope our defences are strong enough to withstand the onslaught of a tricky winter ahead.

Allow me to sketch out some of what I see before me organised into three main themes.

Patterns of exclusion: from the subtle to the explicit

In my experience, its quite typical for a lot of things to be a battle.  Planning how to fight these battles, which ones to prioritise and which ones to come back to can be quite a complex and fluid process in and of itself.

It may seem obvious, but the exclusion I see has increased during recent weeks and months.  There are some days that there are so many fronts on which to fight the battle, it isn’t possible to even determine a starting point.  These are the days when I just have to dig deep and resist the temptation to pull the duvet covers over my head.

A good example of subtle exclusion comes in the form of straws.  How can the simple straw be a form of exclusion?  Allow me to tell you.

Fran needs a straw to take a drink. Any drink at all.  It is an essential tool.  Not having access to a straw has literally led to us going home on previous occasions.  The intake of fluids is an essential to many experiences, as well as being of practical importance.  

But there are alternatives I hear you say.  Of course there are.  We have tried a few.  Believe it or not, we care about the planet too.  We’ve tried the reusable ones.  The metal ones are risky.  Not to put too finer point on it, but having a metal object in ones mouth doesn’t mix well with a strong startle reflex.

Don’t even get me started on the cleaning and hygiene.

At a more fundamental level, this is about choice, control and the ability to access public spaces in a way that works for us.  Trust me too, that by the time you’ve got ready to go out, found an accessible venue, prayed the parking is ok and the lift works, the lack of a straw could literally be the difference between persisting in your day/night out and just going home because it is all too much hard work.

Allow people to access spaces in a way that works for them.  Don’t add another layer of exclusion in.  Viewed in this way, the humble drinking straw is either a potential passport to inclusion or an exclusionary device.  True story.

On other levels, there is the renewal of coronavirus legislation which carries with it a whole host of issues.  I imagine there will be social care battles to be had in the not too distant future. 

Then there is the outside world that I continue to largely self-exclude from. The last time I ventured anywhere was to give my car back, which was one of the last hunkering down acts to complete. This is my choice.  I’ve made it with Fran as it continues to be difficult to find reliable and trustworthy information about levels of the virus and, particularly having come this far, the rewards of venturing into the outside world don’t stack up against the potential risks.

Scope for inclusion

It is though important to say that we have a number of reasons to be optimistic.  Not least that we are still here and still healthy.  Through our actions, we’ve helped not only to keep ourselves safe, but others too.

The virus has made us thankful for the day to day stuff we might have otherwise taken for granted. Deliveries from the supermarket and butchers have become notable events, and we’re conscious of the ability to have food in the cupboard.

Solidarity too has been great, not least with Fran and I.  We have had a grand total of a week apart since the beginning of the year and in that time we’ve only had one argument, which is good going I think.  We also find a way to laugh every day too, which is so precious.  The sense of solidarity between disabled people too has been notable.

These times have made us critically reflect on our values and the things we stand for.

Who are you not seeing?

One thing which has stood out to me is how quiet the disability community has been.  This vibrant space has been quite subdued.  When you factor the above in, it is perhaps not surprising.  We have been trying to get on and keep an eye out for each other.

What this means is that greater focus is needed on unheard voices, the reasons for this, and creative mechanisms to allow those to have a view a way in which to express it.

By asking ourselves who we are not seeing, we’ll also resist patterns of exclusion and create scope for inclusion.  This is a battle that we cannot put to one side.

About the Author

Dr Chris Whitaker is a disability blogger who writes on impairment related issues.