Guest Blog: Tania, On being disabled during a pandemic

MAI Guest blog - Tania DuttonOn disability and the pandemic – by Tania Dutton

It’s taken me a while to know how to start writing this post. I’ve opened my laptop so many times and felt overwhelmed. COVID-19 has had a devastating effect on disabled people, in so many ways. Ways that can’t be comprehended or represented by just one person. I’m going mostly going to focus on how the pandemic has affected me as a disabled person – partly because I don’t know how else to condense the magnitude that is the impact of COVID-19 on disabled people.

I’ll start by saying this: When looking at disability issues, it’s important to remember that no two people are the same. Disability is a spectrum and, even with the same condition, people are affected differently. What you’re about to read is merely a snapshot of some of the experiences of disabled people during the pandemic. No one person can speak for the disabled community, so I’m going to include a list of disabled people who share their experiences at the end of this post, so you can continue to educate yourself on the challenges disabled people face, during COVID-19, lockdown and beyond.

For reference, I’m an ambulatory wheelchair user with a connective tissue disorder, autonomic dysfunction, neurological condition, and a list of allergies as long as my arm. I also have a visual processing disorder, am photosensitive and mustn’t drive. I have recently started learning to use a long cane (which has been interrupted by the pandemic). I am classed as high risk and was advised by my GP to stay home and for my husband to make as few essential journeys as possible.

When lockdown started, there were two main themes I noticed coming from the disabled community on social media.The first was a feeling of inclusion and a hope for better things in the future. For a large number of disabled people, going out is a military operation that requires meticulously planning. This is time and energy consuming and, despite our best efforts, we will most likely still have to deal with accessibility issues on the fly. It’s exhausting and frustrating. When lockdown was put in place, suddenly, we didn’t have the going out accessibility challenges that we would usually face (though some of us had other hurdles – more on this below), some of which would mean we were unable to attend said event. Some house and bed bound people have found that they finally have a social life because they can join in with virtual gatherings.

There was an optimism from many that the need to socialise in a remote way would bring about positive change for the social lives of those unable to attend in person gatherings regularly or at all. That the pandemic would show people that remote events are a practical and enjoyable alternative – a reasonable adjustment, if you will. Some, including me, were sceptical.

The second thing I noticed was a feeling of (justified) anger. And anger that the reasonable adjustments we have been fighting for and denied again and again were suddenly put in place when abled people needed them. Access to education and work were top of the experiences that disabled Twitter users were discussing, including reasonable accommodations to support university study via virtual learning that last year were deemed impractical, but were suddenly put in place when abled people needed it. With things like this happening, is it any wonder that many disabled people feel like second class citizens? We are not an afterthought or an inconvenience. If adjustments can be put in place for all, they can be put in place for one.

Work was another area where there was anger over reasonable adjustments put in place at the start of lockdown. There are lots of disabled people who want to work, but a lack of accessible environment means this isn’t possible. For many, the ability to work from home would allow them to join the work force, but finding remote positions are a challenge to say the least (I know this from personal experience). Lockdown brought about the normalisation of remote working. Wether this continues post-lockdown, remains to be seen. Even if employers offer work from home positions, will they employ disabled people for these jobs?

For me, lockdown didn’t make life more accessible – it just changed the accessibility challenges I face. While I no longer had to concern myself with whether I’d come up against a dropped curb blocked by a car, or whether train assistance would come with a ramp to get me off the train, I had and still have other accessibility challenges.

The inability to see people in person meant an increase in screen time for video chats, emails, messages and more. This comes with it’s own set of accessibility challenges. With my visual processing disorder, neurological condition and photosensitivity, there’s only so much screen time I can manage and this is decreasing (more about why below). For me, the visual aspect of sitting in front of screen is a visual stress, particularly when Wifi and other issues cause the video to break up. In addition, concentrating on less than clear audio takes a lot of energy, particularly when conversations are moving quickly or more than one person is trying to speak.

Accessing Medical Care

As I’ve alluded to above, my health is deteriorating. Unfortunately, many procedures and treatments that are essential for quality of life have been postponed or cancelled. While this has been necessary for the safety of all involved, it has and will continue to make life difficult for those who are affected. My cognitive functioning is deteriorating, along with my balance and memory. As it stands, I won’t be able to anywhere with artificial lighting on my own or for more than a short period of time, until spring 2021. This is because treatment for my neurological condition, which is affected by my photosensitivity, has been postponed. This time frame assumes that the clinic are able to reopen when they anticipate, without any further delays.

There seems little discourse about the impact that missed treatment can have. I’m having to reduce my screen time to minimise deterioration of my health as much as possible, which is hard when so much social interaction is currently virtual. Missing my treatment is also having an impact on my social enterprise, which supports one of the demographics most affected by the pandemic – new babies and their families. I’m not able to offer a full range of services or support as actively as I could normally. And the thinks I am able to do are taking me twice as long.

It’s not just treatments and procedures that are being affected. Many people are having their in person appointments converted to telephone. For some, this makes appointments more accessible. For others, it makes them less. Additionally, some disabled people have been left waiting for there telephone appointment, not receiving a phone call at their allotted time. The most used reason given is that the clinical couldn’t locate the patient’s phone number. While some are being offered an in-person appointment, others are simply being discharged. From my experience a couple of years ago, I know that even when a patient is discharged due to hospital error, a new referral needs to be made.

I had an in-clinic appointment rescheduled as a telephone call, but the clinician never called. I phoned the department after waiting to be called for an hour and a half, to be told that the doctor was running late and I would receive a call before the end of the day. So I waited… And waited… And waited. Having already been incorrectly discharged from the hospital in question previously, I sent their Patient Advisory Liaison Service (PALS) an email, as I was concerned I could again be discharged.

A little later, I received a letter from the doctor I was due to see, stating that they were unable to phone me because they couldn’t find my phone number and that they were giving me an in-person appointment. I was already in conversation with PALS, so contacted them as I didn’t feel it was appropriate or safe for me to travel for over an hour, on two trains, needing physical assistance to get onto each train, with a toddler, just to get to the hospital (and then having to do the same back). Not just because of my being high risk, but also because of my postponed treatment. I had to justify why I wasn’t able to travel to the in-person appointment even though PALS admitted that my telephone number was exactly where it should have been so there was no reason the doctor couldn’t have phoned me. I was lucky – my GP agreed that it wasn’t safe for me to travel and wrote to the hospital saying as much. Not all disabled people have this support.

Another challenge I’ve experienced personally is accessing the daily medication I need to take.

When it was time for my prescription to be dispensed, I contacted the pharmacy to arrange delivery, to be told that there was now a charge for this service. While the £5 fee for not being able to collect my prescription in person was a cost I could cover, it’s one that some disabled people would have struggled with. For those who aren’t aware, Scope, the charity for disabled people, estimate that the living cost for disabled people is, on average, £583 more than our abled counterparts (www.scope.org.uk/campaigns/extra-costs/disability-price-tag).

When I went to pay for my prescription delivery, I couldn’t. I’d been told by the pharmacy team that there was only one way to pay – via their website. However, the website wasn’t accessible to me. I couldn’t read half of the form I needed to fill in. I phoned customer services for support, but they weren’t able to process the payment because of a technical difficulty. All this, just to try and get my regular medication. Unfortunately, the difficulties didn’t stop there.

My pharmacy know me well. They know about my allergies and it’s on my file that there are certain brands of medication I can’t take, because I’m allergic to their ingredients. The past five months, I think I’ve only had one months supply of medication delivered as it should be. Other months have been delivered with items missing, brands that I’m allergic to and incorrect doses. I’ve had to get rather creative to eek out the medication that is safe for me to take, which has also had a knock on effect on my health.

Going Out

As lockdown has started to ease, disabled people are faced with more barriers.

With disabled parking spaces being cornered off in shopping parks around the country to create socially distanced queueing, with no alternative parking being made available for disabled customers. Our options are to take a chance that a disabled parking space has been left available and that it isn’t in use by another disabled person, or to continue shopping online (which isn’t an accessible option for some disabled people).

Many public toilets remain closed. This makes it difficult or impossible for disabled people who need to use facilities regularly or at short notice, to go out much or for any significant length of time.

For those of us who’s disability affects our mobility, we have to largely rely on members of the public to adhere to social distancing rules. As a wheelchair user, I can’t just cross the road if someone is coming close to me. I have to find a dropped curb (that isn’t blocked), making sure that it’s partner dropped curb on the other side of the road is also free. Then I have to assess the pavement angle and condition – my small front caster wheels catch on broken paving easily, glass can puncture my rear wheel tyres and trying to control my wheelchair on a pavement with too steep an angle puts too significant pressure on my joints. Unless you’re right by a dropped curb that you are familiar with, there isn’t enough time to make the necessary judgment and find a safe place to cross.

Many people with a visual impairment also rely on members of the public to adhere to social distancing measures. Those who use a long cane typically feel less than 2 meters ahead of them with their cane’s tip. Dependent on the level of their useable vision, they may not be able to pick up whether they are moving closer than 2 meters to someone. In a similar manner, guide dogs, while extremely intelligent animals, are not able to judge 2 meters, let alone know that there would be a need for such a measure.

I’m going to end this post by talking a bit about language, in relation to going out.

Face coverings are now mandatory in a number of places inside, where it is harder to remain socially distanced. Disabled people are some of those exempt from wearing these if they fall into certain groups. These include disabled people who are unable to put on, wear or remove a face covering and companions of those who rely on lip reading and facial expressions and clear sounds.

Unfortunately, a number of sources have referred to these reasons for exemption as ‘reasonable excuses’. This use of ‘excuse’ perpetuates prejudices that both visibly and invisibly disabled people face. It perpetuates the harmful notion that disabled people just need to ‘push harder’, ‘think positive’, ‘exercise more’ and all sorts of other ridiculous scenarios that place blame on disabled people.

Disabled people who are unable to wear a mask are already regularly facing discrimination, even though the exemption guidelines state that people should not be made to disclose or prove their disability.

Phew! That was a LOT and I feel like I’ve barely scratched the surface of the numerous ways in which disabled people have been impacted by the pandemic.

Please take the time to check out the awesome disabled people and carers listed below, who are all sharing their experiences and thoughts on living with disabled during the COVID-19 pandemic.

Gem, @wheelsnoheels
Nina, @nina_tame
Poppy, @p0ppyfield
Lorna, @creamcrackeredblog
Gem, @gem_turner
Dr Amy Kavanagh, @blonde_historian
Shona Louise, @shonalouiseblog
Chloe Tear, @chloeltear
Emily Morison, @ableemily
Dan White, @DanWhite1972
Glen, @well_eye_never
Emily, @DavisonEm
Hannah, @hannahdeakin

Tania’s contact details:
Social media/contact details are:
Web/Blog: www.whentaniatalks.com
YouTube: www.youtube.com/whentaniatalks
Twitter: www.twitter.com/whentaniatalks
Instagram: www.instagram.com/whentaniatalks
Facebook: www.facebook.com/whentaniatalks