Featured image: A row of train station barriers, one with the blue and white wheelchair symbol and a green arrow.
The announcement that coronavirus restrictions will be relaxed in the UK from 24th-27th December, and the opening of the student travel window from 3rd-9th December have prompted many to start making plans about whether to travel, who to see and what to do this Christmas. The general line I’m seeing in my social media circle is ‘Well, you could travel to see your family, but this will result in more deaths.’ This is harsh but undeniably true on a societal level, so the unselfish thing to do seems to be not to travel or to mix with other households. However, for disabled people, and particularly those who need care and assistance with daily living, it’s not that simple.
For me and other disabled people it’s not just a case of deciding whether to take a risk for the sake of attending a celebratory family gathering. As a student with daily living and personal care needs, I am going to need to travel in the student travel window to ensure that my basic needs are met. I have to choose between travelling home and potentially putting me, anyone I meet on the journey and my older parents at risk, or asking my PAs’ to work over the Christmas period, putting them at risk as key workers at a time when the virus is expected to spread more rapidly, and preventing them from being able to enjoy time at home or with their loved ones should they choose to see them. I could seek emergency agency care, but this would add to agency carers’ already stretched workload, and put me at risk by having a stranger in the house who will have already interacted with multiple clients that day. Unfortunately, the combination of near constant illness since I moved to Leeds, the effects of the pandemic, and the heavy workload of a Master’s degree, means that I haven’t been able to make friends in Leeds that I could ask to cover my assistance. The intensity and personal nature of the support I need means it would be unable to be met by existing mutual aid groups. I have felt so much guilt and anxiety about what the right decision is, and what could happen if I make the wrong choice. There are no good options here.
Two of my PAs are young students and it is unthinkable to them to not see at least their immediate family over Christmas, especially as there is a national student testing program which will supposedly allow us to travel home safely (What a lot of unis aren’t telling students however is that the self-administered tests have a 42.5% false negative rate.) It is also a red line for me to ask my employees to work over Christmas, let alone in such risky circumstances, when I do have another viable option available to me. I know a lot of disabled people may feel the complete opposite way, and will have arrangements with their PAs or care agencies in place over the festive period to lower the risk to themselves and their families. This may particularly be the case if they or their assistants are not students. Disabled people who are shielding will likely have had no choice at all when it comes to making Christmas assistance arrangements. All of these decisions and scenarios are completely understandable, but the point is none of them are easy, none of them can be labelled unequivocally ‘selfish’ or ‘unselfish’ and none of them are low risk.
Even disabled people who are not facing a decision about whether to travel are likely to have heightened anxiety this Christmas. They might have had to arrange PA cover for those who don’t want to work over Christmas, they might be training someone new, or their agency may have brought in temporary staff to cover the Christmas period. All of these options come with a new burden or risk. They may even be facing the prospect of having to manage on their own over Christmas, which could exacerbate the effects of their impairments or leave them without their basic needs being met. It’s important to remember that many disabled people will be stuck in institutions over Christmas, their choice and control completely removed and their risk of infection even greater. Even for the disabled people whose assistance is not disrupted, the knowledge that so many people will be travelling over Christmas is likely to make them more worried about the increased risk of infection, especially as many will be medium or high risk themselves already. Again, there are no good options here.
I’m not really sure how to wrap up this post, except to say, that if the only factor in your decision to travel and mix this Christmas is whether or not you want to celebrate with your family, especially if you already live with loved ones, then please try and be brave and stay put if you can, just for this year, as a vaccine appears to be around the corner. If on the other hand your decision is more complicated and your care and assistance needs are in the balance, then I see you, I know there are no good choices, and whatever choice you make, please try not to beat yourself up over it and find as much joy and peace this Christmas as you can.
