Covid-19 and disability

The UN’s International Day of Persons with Disabilities is marked on 3 December each year. For 2020, Covid-19 has brought huge additional challenges for disabled people (including neurodiverse people) and their carers. IP Ability committee member Victoria Barker (Finnegan) explores these for us with the help of her IP Ability colleagues, and provides some guidance for people who want to be better allies to their disabled or carer friends and colleagues.

IP Ability are also running an event on 3 December, to mark International Day of Persons with Disabilities. They would love to see you there. For more information and sign-up details, see here.

Victoria writes:

There has been no shortage of media articles discussing how Covid-19 has affected various groups of people, but it is exasperating to see lazy assumptions that Covid-19 has been universally advantageous for disabled people, since accessibility barriers were removed by hosting all events online. This is particularly frustrating for those within the disability community as these assumptions fail to recognise the spectrum of conditions classed as “disabilities”. While there have been some advantages for the disabled community related to increased home working and online events, the full picture is more complex.

There have been a number of inquiries and calls for inquiries to assess the true impact of Covid-19 on the disabled community[1]. In this article, IP Ability committee members summarise some of the ways in which Covid-19 has impacted on various members of the disability community.

Physical disabilities

It cannot be denied that virtual events are easier to access for persons with limited mobility. However, there are many more factors to consider when assessing the impact of Covid-19 on persons with physical impairments. For example, the general advice to avoid touching surfaces when out and about is completely incompatible with the use of handrails or Braille. Many parks and attractions have implemented Covid-secure “one-way” systems to control the flow of visitors. In many cases, however, these do not take into consideration wheelchair accessible pathways or persons who cannot walk the full one-way loop. It is now difficult to loan wheelchairs and mobility scooters, as these loan schemes have been stopped for hygiene reasons. This greatly impacts the freedoms of those who rely on such mobility aids. So, while online activities are generally more accessible for the disabled community, many in-person activities have become less accessible.

Long-term health conditions

Persons with long-term health conditions face the same risk of infection from Covid-19 as the rest of the population, but the danger posed by the virus may be compounded by their underlying health conditions. Most people with long-term health conditions require regular medication and medical appointments. However, access to routine medical care has been significantly disrupted by Covid-19.

Many people with long-term health conditions have found themselves trapped between competing worries: not wanting to burden the NHS and not wanting to access NHS care for fear of contracting the virus. Research commissioned by CQC and Healthwatch England for the Because We All Care campaign also showed that[2]:

81% of people with long-term health conditions reported issues when trying to access health and social care services, such as longer waiting times. This is 17% higher than the general population.
52% of patients with long-term health conditions did not want to put additional pressure on Health and Social Care services by giving feedback.
32% of people with a long-term health condition required more support from family and friends during lockdown.

Many people with long-term health conditions have also been shielding, either on the advice of the NHS or through personal choice. While shielding itself presented certain logistical challenges relating to obtaining food and medication, ending shielding has also caused significant anxiety, since the risk to health from the virus has not diminished.

Despite the challenges listed above, some people with long-term health conditions have found that their conditions improved when home working became the norm due to reduced stress caused by commuting[3]. Prior to the pandemic, one of the most commonly requested reasonable adjustments for employees with long-term health conditions was home working. Such requests were often denied on the grounds that home working is somehow “less efficient”. However, lockdowns globally have proved that this is not the case. Going forwards, this will hopefully mean that home working for the disabled community will be easier to access and less stigmatised.

Neurodiversity

Covid-19, physical distancing, and disruption of routines have combined to create a unique challenge for the neurodiverse community. There is a perception that neurodiverse people, and especially those with autism, are unsociable and that therefore social distancing and home working will be beneficial. While this may be true for some people on the autism spectrum, it is an oversimplification, and the lack of social contact may hinder the social progress individuals have made.

The Different Brains website includes a number of different personal stories detailing how members of the neurodiverse community have coped with lockdown: see here.

Mental health

Before the pandemic, general awareness of mental health conditions was improving. As a result, there has been more awareness of the impact of lockdowns on mental health. As with other medical conditions, access to care has been limited, and it is therefore difficult to assess the true impact of Covid-19 on mental health. One study by The Lancet, however, found that over a quarter of those surveyed in April 2020 were experiencing clinically significant levels of mental distress (27.3% of participants). Significantly, the worst affected groups were young people (aged 18-24), women, families with young children, and those in employment [4]. Given such studies and the improved awareness of mental health issues, it is hoped that mental health may finally be given equal weight (and funding) to physical health after the pandemic.

It is worth noting that a study by the Law Society [5] on the impact of lockdown on disabled solicitors found that mental health in some individuals improved as they were able to attend meetings and networking events that they may otherwise have missed through flexible working arrangements.

Invisible disabilities

While there is significant overlap between invisible disabilities and other disability categories, it is worth mentioning invisible conditions that prevent mask wearing, as listed on the UK government website [6]. These include autism, panic disorders and breathing difficulties.

Masks are now compulsory on public transport and in shops in the UK, but persons unable to wear masks on medical grounds have been subject to abuse [7]. Face mask exemption cards are suggested as a way to show that a person is exempt, but this raises difficult privacy questions since, under normal circumstances, a person is free to hide or disclose their health conditions as they see fit.

In recent years, the sunflower lanyard scheme [8] has been adopted as a means of showing that a person has an invisible disability. While more public awareness of this scheme is required, it is encouraging to see that it has been adopted and promoted by several large UK retailers in recent years.

Carers

While the closure of schools and childcare centres has been widely reported in the media, it is less publicised that lockdown also resulted in the closure of many respite day care centres. Longer-term respite care (for example short hospital or care home stays) was also either unavailable or unappealing due to the increased risk of contracting the virus.

An online survey by Mencap found that almost 69% of respondents said the amount of social care support their loved one received from their local authority had at least halved, in terms of hours, during lockdown, and that 79% of carers had to take on more caring responsibilities as a direct result [9].

Summary

Covid-19 has had a significant impact on the disabled community. There are, however, ways in which we can all help to make things better:

Be kind: Covid-19 has affected everyone in different ways, so try to be patient.
Ask if anyone has additional needs, and do not make assumptions.
Share information in advance of meetings. By sharing information in advance, persons requiring more reading time will be accommodated. This can also help to reduce anxiety in persons struggling with mental health.
Follow up after meetings. It is much harder to spot a “confused face” in a virtual audience, and a participant may have dropped out with poor Wi-Fi without you noticing. It is therefore more important than ever to follow up after virtual meetings to ensure that everyone is heard and understood.
Remember that support is available, either online or via the telephone, through most charity websites.

Finally, donations to charity have fallen due to the pandemic, with many charities predicting massive shortfalls. For example, the Association of Medical Research Charities estimates a 38% loss in fundraising income, with a resulting 41% decrease in medical research spending over the next year [10]. Therefore, if you can support a disability charity, please consider doing so.