Where’s Your Carer? (Emma Steer)

Despite it being late afternoon I found myself sweating in the relentless heat of the midsummer sun as I waited for the bus home. There was only myself and one other person in line. I was dressed in stuffy formal clothes having just come from a job interview, and the stranger was wearing grubby clothes that indicated he had been working on the nearby building site. We were at opposite ends of the bus shelter ignoring each other’s presence by looking at our phones, as is British custom. The bus arrived on time and I was delighted to see that the wheelchair space was completely empty, as the next bus wasn’t due for another half an hour.

The doors of the bus hissed open and the driver, having already spotted the wheelchair, immediately climbed out of his cabin to pull the ramp out. He then asked the other person at the bus stop for two adult tickets. Despite us being spaced apart and dressed completely differently, obviously the stranger was my carer as I couldn’t possibly be alone. In all fairness to the bus driver once I had cleared up the confusion he was suitably embarrassed, and very apologetic. However, this is far from the only occasion on which I have encountered this presumption.

It is not uncommon for me to visit the doctor’s on my own, as after seven and a half years of chronic illness I am more than used to dealing with medical matters. The surgery is split over two floors, with the entrance on a mezzanine between the two. No staff are on this floor, just a touchscreen where you sign in and are told where to go. The lift is a temperamental platform lift with manually operated doors, the only problem being that once inside the lift there is no way of shutting the door behind you. Of course, when the door invariably fails to shut properly behind me the lift won’t budge, leaving me stuck between floors. I regularly have to wait for a kind passer-by to push the door shut behind me.

Naturally I raised this with the members of staff as an issue, but no one seemed to see why this was a problem as they all thought I should have someone with me. I explained that I don’t receive financial support for care, that my partner was at work, and that my family lived in Bradford. They shrugged and said I should leave extra time for someone to pass by so that I wouldn’t be late to my appointment. When I explained that I was also in employment so didn’t have time to spare, and that I wasn’t paid for any time off I had to take, they were utterly flabbergasted but could offer no solution. Instead they reminded me how much it would cost to have the magnetic clamp on the lift door that was causing the issue fixed, and how tight NHS budgets were. They were equally perturbed when I then asked if one of the receptionists could close the lift door behind me so that I could go home, but they begrudgingly complied when they noticed the entire waiting room staring at them expectantly.

When visiting bars and cafes I have had staff ask the person behind me in the queue what we wanted, and on one occasion this also happened at the bank. Given that I tend to visit the same locations this has become less of a problem with time, as staff are now used to seeing me on my own, but I encounter similar reactions from members of the public. Often I will be referred to in the third person which is incredibly awkward and uncomfortable, both for me and the person unlucky enough to be in my vicinity who was assumed to be my carer.

The expectation for disabled people to always be with a carer doesn’t just affect me when I’m out on my own. As couples are wont to do, my partner and I will often go out together. Unfortunately, because he is bipedal and I am distinctly not, he is automatically assumed to be my carer. Any kind of display of affection such as holding hands, or even a familiarity in the way we talk to each other, leaves him exposed to some horrified stares. It saddens me that people assume disability means someone cannot form meaningful relationships with others, or that we are unlovable. It also infuriates me that people presume my partner to be taking advantage of some kind of vulnerability on my part.

Similar things happen when out with friends, colleagues, and family members. While it is true that they often assist me with doors, reaching things, and clearing a path for the wheelchair, they are not my carers. In exactly the same way women have had to fight for their independence and recognition of their individuality from husbands and fathers, disabled people face a similar battle. Some disabled people need a carer and that is absolutely fine. Some disabled people don’t need a carer, and that is also absolutely fine. Independence is something that should be encouraged in disabled people but not forced upon them. There is a possibility that some people will take this argument too far and refuse to help someone who is disabled, even if they specifically ask for help. No one should ever have to face something alone that will put them at risk, where a little assistance would prevent disaster. There is a balance between complete dependence and independence that will vary from person to person, and case to case. That said, I would be happy never to be on the receiving end of the question “Where’s your carer?” ever again.

© 2019 Emma Steer. All rights reserved.