31 people took part in the study. Participants were aged between 26 and 77 years old, were predominantly White British (26/31) and experiencing mobility problems (25/31). 16/31 participants identified as male. Most participants either lived alone (13/31) or with a partner/ spouse (12/31) and 12/31 participants were unable to work due to their disability. For full participant demographics see Table 1.
Table 1
Participant characteristics
| Characteristic | Mean (range)/N |
| Age | 55 (26–77) |
| Gender |
| Male Female Transgender male | 16 14 1 |
| Ethnicity |
| White British White Other White Irish Indian Other mixed background | 26 2 1 1 1 |
| Living situation |
| Alone With partner/spouse With parents With children With housemates | 13 12 2 2 2 |
| Marital status |
| Married/civil partnership/live with partner Single Divorced/separated Widowed | 12 10 8 1 |
| Employment status |
| Unable to work due to disability Retired Full time Part time Self-employed Unemployed and seeking work Full time student Missing data | 12 5 4 4 3 1 1 1 |
| Qualifications |
| Postgraduate Undergraduate Post-16 vocational course A level or equivalent GCSE/CSE/O -levels or equivalent | 12 11 4 3 1 |
| Disability* |
| Mobility problems Sight impairment Hearing impairment | 25 7 6 |
| *Six participants indicated multiple disabilities |
Themes
Six key themes were identified during the analysis that represented participant experiences of living with a disability during the pandemic, and the impact of social distancing restrictions on their health, wellbeing and ability to access support: i) adaptations to healthcare provision led to a deterioration in health; ii) exacerbations of inequalities in access to public space due to social distancing guidelines; iii) experiences of hostility from able bodied people; iv) loss of social lives and encounters; v) difficulties maintaining distance from others and subsequent fear of infection and vi) strategies to support mental health and coping when confined to the home. Themes and associated subthemes are presented in Table 2 and described below along with supporting participant quotes.
Table 2
| Themes | Subthemes |
| 1. Adaptations to healthcare provision led to a deterioration in health | 1.1 Cancelled and delayed appointments and treatments 1.2 Difficulties communicating with health services remotely |
| 2. Exacerbations of inequalities in access to public space due to social distancing guidelines | 2.1 Reduced provision of accessibility support 2.2 Queuing for goods and services 2.2 Difficulties navigating public transport and parking |
| 3. Experiences of hostility from able bodied people | |
| 4. Loss of social lives and encounters | |
| 5. Difficulties maintaining distance from others and subsequent fear of infection | |
| 6. Strategies to support mental health and coping when confined to the home | 6.1 Use of arts and home-based hobbies 6.2 Unhealthy lifestyle behaviors 6.3 Mitigation of social isolation via technology |
1. Adaptations to healthcare provision led to a deterioration in health
Many participants experienced a reduced quality of care due to changes in structure and delivery of health services caused by the social distancing rules. This included appointment and service cancellations, treatment delays, difficulties communicating over the telephone rather than in-person, concerns around patient confidentiality and a lack of “joined-up” working between different healthcare services. Participants described how these changes impacted their ability to manage pain and led to a deterioration in their mental and physical health.
1.1 Cancelled and delayed appointments and treatments
Many participants reported feeling let down by healthcare services and the lack of care received. Participants expressed feeling uncertain in the wake of cancelled or postponed appointments, and that this disruption to care made daily life more challenging:
“And then appointments keep being cancelled at the last moment, and things being changed, and, yes, it’s really, really disjointed at the moment, and it’s quite hard to get any sense of continuity at all. Which, of course, you know, I understand, everyone’s trying to catch up from COVID and stuff, but it’s not making my life very easy to manage.” (female1, age 40–49)
An overall increase in demand on the National Health Service (NHS) as a direct result of the pandemic led to longer wait times for referrals which, in turn, delayed disability support:
“(Social services) referred me to the team that assesses you for continuous NHS health care. Now, normally they should have seen me quite quickly. They’ve still not seen me, still not assessed me. Even though both the social worker and my GP have written to them saying it’s urgent. So I’m not really, I think I should probably be getting that support, and I’m not. Because they are saying they’ve got such a long queue because of COVID.” (female2, age 60–69)
These delays to treatments throughout the pandemic not only delayed support but resulted in a deterioration in health and an increase in negative symptoms for those living with disabilities:
“I have B12 injections because I can’t absorb it properly. When the pandemic started, they made me go onto pills, but I also couldn’t absorb the pills, so I had to go back to the injections. But because of the pandemic, they can’t book me appointments far enough in advance so that I can book the next injection when I have the injection done, which is really complicated and has led me to miss multiple of them...I missed one three months ago. It wasn’t until the next one was due that anybody noticed...My hands were, and still are, worse than they were before I missed one.” (transgender male1, age 20–29)
Many participants expressed difficulty in managing pain throughout the pandemic, with some participants attributing this to the closure of leisure and exercise facilities that would have otherwise benefited and helped them to maintain good health and wellbeing “Access to physio was compromised. No gym, no swimming pool, all things I relied on heavily” (female3, age 60–69). In addition, a pause in provision of specific pain treatment severely impacted the wellbeing of some participants and caused new symptoms:
“I used to get nerve root block injections every six months. I’m under pain management team at the Hospital in [Location], and during the pandemic, that was all stopped. So, my pain levels were about three to four out of ten, all the time, and now they’re six to seven, so that’s really difficult to live with. Now, because my back’s so bad, and my pain levels are so bad, and I’ve got new symptoms, like numbness of my feet, my pain management consultant isn’t happy to just resume the injections until he sees me.” (female4, age 50–59)
1.2 Difficulties communicating with health services remotely
Participants expressed frustration at being unable to book routine doctors’ appointments during the pandemic due to the implementation of new online booking processes to manage virtual consultations:
“The local surgery have introduced a new, computerized way of booking appointments, and it’s a real difficulty getting through. You can’t just ring up and say, I’ve got a problem, can I book an appointment with the doctor? The receptionists have been told to tell you to push off and go online. And then, I’ve had to make an appointment about a problem for this week, and it took me about half an hour to get through the computer system to book an appointment.” (male1, age 70–79)
Many participants described the difficulties of communicating with healthcare professionals over the telephone as opposed to face-to-face. Conveying symptoms and explaining complex needs to GPs was challenging:
“The first thing you’re offered is a phone call first, and then the GP decides whether it warrants a face-to-face, and I think there’s something lost in translation there, because what the GP is hearing on the phone, without seeing you, is different to how you’re feeling.” (female4, age 50–59)
One participant explained that they were no longer able to access in-person appointments which was beginning to “really eat away at [them]”, stating that the difficulty of trying to convey symptoms in telephone appointments had a significant effect on their mental health:
“...it was actually the amount of stress that it induced for me, and then I’d wait two or three hours, and if I’m lucky, I get five minutes. I can’t cover anything on the phone, it’s been really hard, so from that sense, I really feel that my overall care has dropped through the floor, really, which has been quite upsetting.” (female5, age 60–69)
A reduction in face-to-face consultations not only affected the mental health of those with disabilities but also their physical health. Some participants experienced a deterioration in symptoms or developed health concerns that were left unattended and untreated. One participant with hearing problems described a severe deterioration in their skin condition because they were unable to see a doctor in person.
“Other health appointments, yes, the hearing is the biggest thing, my ears. Because right at the beginning of the first lockdown I developed eczema in my ears which affect the hearing aids. And because I couldn’t actually see anybody or anything, and even GP and everything was all on the phone, which was pretty useless really. And so I had three really bad ear infections because it just got so bad I couldn’t go to see audiology, really. So, yes, that’s been… Really only trying to sort it out now. So pretty horrendous really, yes.” (female5, age 60–69)
2. Exacerbations of inequalities in access to public space due to social distancing guidelines
Restricted access to public spaces was experienced by many participants, with some observing inequalities in access once facilities began to open to the general public, difficulties accessing shops and navigating travel. A minority of participants did however observe improvements in accessibility or experienced positive adaptations to services and spaces.
2.1 Reduced provision of accessibility support
As guidelines instructed people to work from home or stop work completely, support services to aid those with disabilities to access public spaces became less available, even when facilities were open to the general public:
“We went to the visitor centre, and all the shops were open, everything was open in [Location], and I asked where the disability assistants were, and they said they were still furloughed. So, that means that there was no access for somebody like me, and that’s the difference. I’ve found that access is worse since the pandemic.” (female4, age 50–59)
Further inequalities were experienced in accessing purpose-built facilities that directly supported physical health. One participant described the prolonged closure of inclusive swimming pools despite privately owned leisure centres reopening to the public:
“I would like to go back swimming, and that has been a bit more difficult because of the pandemic, because of the pandemic many centres have closed and they haven’t reopened yet. Because of my disability the swimming pool needs to be warmer, it needs to have a hoist and a lot of these places, which are schools or council places, they have not reopened yet.” (female6, age 50–59)
One participant described the adverse effects of the pandemic on previous societal progress that had been made around inclusivity in public spaces:
“That’s the biggest impact of COVID-19 really, is that all the progress that was made in accessibility seems to have gone back several years…It’s too difficult to go out, really, now. I always find there’s just problems.” (female5 60–69)
Some participants did however remark that accessibility had improved for them since the pandemic due to fewer people, shop closures and the subsequent removal of trip hazards:
“From just going out and about, it was actually easier for me, because less people out and about. More importantly, because hospitality services were shut, I had less of an issue of tripping over street furniture, board signs and whatnot. So, that was actually a positive for me.” (male3, age 50–59)
2.2. Queuing for goods and services
Queuing outside shops or healthcare services posed a considerable challenge for those with disabilities. exacerbating chronic pain symptoms and causing discomfort. One participant identified queuing as “one of the biggest problems” (female5, age 60–69) in gaining access to their medications. Many participants stated that no chairs were offered, nor allowances made to accommodate for their disability:
“They only let you in five minutes before your (hospital) appointment, so we were outside on the street queuing up, and through the cold months, that’s not very pleasant. As I suffer with rheumatoid arthritis and the cold affects the arthritis, then that also wasn’t very good, so I’m having to stand there because there’s no seats. So that was sort of a downside, that they couldn’t let you in, because most people that were going there had some form of disability, and each one of them could give a reason why they should be inside and sat down.” (Male2, age 50–59)
Participants also expressed frustration that adaptations were not put in place for them to simply bypass queues for goods and services:
“There should have been an awareness, where people with reduced mobility and people in pain, and people with hidden disabilities, should have been able to go to the front of the queue. And it should have been obvious, a sign, a sign up, to say, if you’ve got any disabilities...” (female4, age 50–59)
The same participant did however acknowledge that their GP surgery had considered those less able to stand and had provided chairs within queuing systems, which contributed towards a feeling of inclusion within the healthcare practice:
“Well, I think life, in general, is difficult, when you’re disabled. So, even getting the vaccine, there is a queue, because you’re given a time slot. My surgery is quite good, because the building that they had set up for us, there was chairs in the rows, the zig zag, so there were two points where you could sit down in the queue. So, they’d obviously thought about it, but I have seen on the news, people queuing for an hour and a half.” (female4, age 50–59)
2.3 Difficulties navigating public transport and parking
A lack of adequate public transport throughout the pandemic led many participants to feel cut off from everyday life and unable to carry out tasks outside the home. One participant who was blind described the challenges of regular bus routes being reduced or changed, coupled with not being able to access a guide to help navigate these changes because of the social distancing rules:
“Well, to get anywhere, I rely on public transport, and with that not running on the routes that I need, and even when it does run, like, things like with the bus station being closed, that means I have to use unfamiliar environments, which means that I’d basically need guiding. And being guided as a blind person in a safe way, requires being much less than 2-metres away, because you need to take their arm. There are methods of guiding for runners and things, but they don’t really work when you’ve got uneven ground and steps to deal with and things like that.” (male4, age 50–59)
Many participants echoed feeling frustrated and excluded due to the implementation of pedestrianised streets during the restrictive periods. This significantly reduced access to disabled parking, making vital tasks such as collecting prescriptions problematic.
“Our high street was pedestrianised from 9:00 until 4:30, every single day, except for buses and deliveries, not except for disabled people with blue badges. So, I can’t walk from the car park to < Pharmacy>, so that has had an impact, so my partner’s had to be going and picking up my prescription before he starts work.” (female4, age 50–59)
3. Experiences of hostility from able bodied people
Many individuals encountered difficult or even hostile circumstances throughout the pandemic because of implicit ableism directed at them from members of their community. Some participants described the lack of understanding exhibited by able-bodied people when going about their day because their disability was not perceived as ‘visible’:
“I’ve also noticed a lot of attitudes change, during the pandemic. I’ve had people say to me, you don’t look disabled. I’ve had people say to me, you can’t park there, it’s a double yellow line, even though I’ve got a blue badge. And I’ve had people say to me, you’re too young to have a stick.” (female4, age 50–59)
One individual who was blind encountered hostility because they needed close physical guidance from others to navigate shops, which was interpreted as breaking the rules:
“there’s been a lot of hostility to blind people out and about and not social distancing, because we need guiding and all of that sort of stuff, so… At the start is was very, very difficult, and I got through by the seat of my pants to be honest.” (male4, age 50–59)
The same participant explained that friends who were also blind had experienced hostility due to requiring additional support when entering shops:
“People telling them that they shouldn’t be out and about, and just people being really off with people, and not being able to get service anywhere, and being told that only one of them was allowed in a shop at a time, when they actually both needed to go in.” (male4, age 50–59)
Some participants described irrational accusations being made towards people with hidden disabilities when they used lanyards to identify themselves as disabled to be able to navigate public spaces safely:
“And a lot of people that use the sunflower lanyards have had people accuse them of faking it to not be vaccinated or things like that. Even when it’s somebody that’s using it to signal I might need to sit down, or things that don’t have any direct connection.” (female4, age 50–59)
Some even moderated their own behaviour and actions in anticipation of confrontation from able-bodied people when adhering to social distancing rules:
“The two-metre, then metre distance, I respected it completely, and still try to, but last Saturday, when I was in the convenience store, I had some guy literally right behind me. I could feel his breath on my neck, and I didn’t have the confidence to say, excuse me, could you back off? Because I’ve seen people react, and I can’t be dealing with somebody being angry with me, at the moment, so I let it happen.” (female7, age 50–59)
4. Loss of social lives and encounters
Many participants experienced a decline in mental health throughout the pandemic as a result of feeling socially isolated. One participant felt this was due to a deterioration in their disability paired with a loss of confidence due to socialising with others less often:
“I don’t know how to describe the feeling I get, but it’s just, no, I don’t want to go out there. It’s more that I don’t want anybody to see me. I want to remain invisible and anonymous now, which is really bizarre. It’s the complete opposite from what I was.” (female7, age 50–59)
Others attributed their sense of isolation to a decrease in social activities as a result of the restrictions:
“I feel more isolated. I don’t know if lonely is the right word, but I do feel alone. I’m sure there are times when I do feel lonely, but I feel like I’m not included in things because nobody’s doing anything that you’re included in. So, I don’t get invited out, but that feels normal, at this stage. And I guess, in my head, the whole world’s a different place, and as a consequence, I am more alone than I was and more isolated than I was.” (female3, age 60–69)
Some participants with hearing impairments felt excluded from everyday social encounters due to difficulties communicating with people wearing masks:
“Well, certainly when everybody was wearing masks, that is a problem, because you can’t lip-read through a mask, so that could make me very tense at times and just feel more isolated, I just couldn’t get through. Now that fewer people are wearing masks, life is easier from that point of view. I’m not shy about asking people to speak louder.” (female8, age 70–79)
5. Difficulties maintaining distance from others and subsequent fear of infection
Some participants described being concerned about other people’s behaviour, and perceived flouting of the 2-metre distancing rules by others was a recurring theme:
“The only problem I’ve got is other people. Obviously, I shuffle along, and so, because it’s taking me time, people will get very annoyed with you. And they’re breathing down your neck, they’re not social distancing, they’re right behind you or they’re right alongside you.” (male6, age 60–69)
The behaviour of others led to anxiety around catching COVID and this fear of infection led to increased home confinement and a decrease in activities which, in turn, caused adverse health effects:
“It’s set me back basically at least two or three years, because I’ve lost all the muscle in the right leg basically. I was getting stronger and stronger and meeting people again. And now I’ve gone back to what I was like four years ago, not seeing anybody, and struggling again to go out, because I’m frightened of catching this COVID thing. So, it’s pushed myself now to go out and do things. It’s hard, really hard. It’s getting the strength back again.” (male7, age 50–59)
Some participants were also worried about the potential implications of catching COVID on their health which continued to impact their behaviour around others:
“Yes, because if I get ill, if I get flu, it affects all of my spine, as well, so it actually affects everything. So, if I’m unwell, it can wipe me out more, if that makes sense, so I’ve really got no idea what COVID would do to me, it’s too scary to think about. But it’s made me, probably, why I’m so rigid about mask-wearing and about keeping away from people, is because I don’t want to get sick.” (female4, age 50–59)
Wheelchair users described experiencing an invasion of their personal space by members of the public before the pandemic, which had continued during the implementation of social distancing measures. This resulted in undue stress when attempting to maintain the 2-metre distancing rule from others:
“When you’re in a wheelchair, you’re pretty much invisible, and I’ve never really had a sense of personal space. So, it’s actually been really difficult for me to go out in my wheelchair, with all the social distancing, because people were terrible beforehand, and it’s still bad...People won’t respect, and it’s so difficult for me to move out of the way, and for me, I want people to keep their distance, I don’t want people standing right next to me.” (female1, age 40–49)
6. Strategies to support mental health and coping when confined to the home
6.1 Use of arts and home-based hobbies
Many participants turned to healthy coping strategies during the pandemic as a means of mediating anxiety and easing ill health associated with their disability, including the arts:
“I’m very restricted physically and most of the time I’m in pain, even when I’m in bed. So that can easily get you down, believe me. So I have to make a real effort to concentrate on other, or more positive things. I’m writing a booklet at the moment and still trying to finish my art work. So I keep busy mentally.” (female2, age 60–69)
Arts activities such as writing were used as a way of practicing mindfulness or regulating emotion when participants felt lost or upset about their experience throughout the pandemic:
“It’s been tricky for me, anyway, being in a wheelchair, but now that I feel I missed that so much, so I feel like I lost myself, really, and I think, in truth, I probably was losing myself, pre-COVID, but that experience, through the pandemic, I think it really made me realise, actually, how much of me has gone... But my writing, really, my writing is something I find very cathartic, so when I’m in that kind of space, I can put anything down, but normally, that can really help my mood.” (female1, age 40–49)
One participant explained that participating in art and crafts relaxed them, particularly when stress caused a flare up of physical symptoms:
“I can be doing something in the house, say for instance mending a switch or something like that, and my hand will be like that with the screwdriver, shaking all over the place. And yet, I can pick up these little diamond things and put them in place, without a tremor, and it really does relax me, it's good” (male6, age 60–69)
6.2 Unhealthy lifestyle behaviours
As a result of stressful circumstances caused by the pandemic, some participants adopted unhealthy coping strategies to deal with declining health. When asked whether they had developed any symptoms or habits due to anxiety or stress, one participant acknowledged “stress eating, which then doesn’t help, because of the dietician and all that jazz that I’m under.” (female9, age 30–39)
Others described increased alcohol consumption that had adverse effects on their overall health:
“No, it's just happened recently in the last few weeks, a diagnosis of diabetes 2. That is related to me having become overweight which was something that happened during lockdown. It is in my own unscientific, but I think anecdotal opinion related to the fact that I drank a lot more during lockdown, which obviously causes an increase in weight. Also, alcohol consumption is related to diabetes 2. I was also taking less exercise.” (Male10, age 60–69)
For others, a lack of exercise combined with increased consumption of food and alcohol during the pandemic resulted in weight gain:
It’s harder for people who use wheelchairs to lose weight, particularly with somebody of my level of injury that don’t have any control of core muscles and the abdomen. So, it’s going to be tough for me to lose the weight that I’ve put on as a result of inactivity and eating and drinking more, so I think that’s an indirect effect. (male18, age 30–39)
6.3 Mitigation of social isolation via technology
Despite the difficulties of physical exclusion from friends and family, some participants mitigated the isolating effects of staying at home through digital channels of communication. Social media was a popular medium participants used to keep connected:
“What I will say is if it hadn't been for Facebook, Twitter and Instagram, I’m a user of social media, I think I would have felt a lot more restricted and a lot more lonely. But because I can be watching The Great British Bake Off, and I’ll follow the Twitter hashtag, in fact, I would say I’m more connected now because of social media. And if it wasn't for social media or FaceTime, I don't know what I would have done.” (female12, age 40–49)
Some even found their social lives expanded as a result of group meetings moving online. Video calls made participating in group activities more accessible which one participant favoured over in-person meetings:
“My local storytelling group, which I was already finding difficulty in going to because they meet in the evenings, suddenly once the pandemic had started, decided to have their meetings on Zoom, to try out, see if that worked. I discovered that way that I’m actually good at telling stories on Zoom, which not a lot of storytellers are, at least not at that point.” (female8, age 70–79)
Video calls negated the need for participants to physically travel to meetings. This made group discussions easier as there were no barriers to accessibility:
“I didn’t really ever engage with Zoom and stuff before, but it’s proven. Like, I’m on various different boards and stuff, like I’m on my local housing association security board, and days gone by, they’ve asked me to trapse over to somewhere, God knows where for a meeting, whereas now, I can just do it on Zoom.” (male5, age 40–49)