Page 13 - Community Living Magazine 34-2

cover feature: coronavirus

Czech Republic England because they had a learning disability. We
One family’s story People with know this has made some people feel
illustrates the pandemic’s learning disabilities their lives are not valued and afraid of
impact here. The mother have told us they needing medical help.
(who gave the account) is a teaching feel forgotten by the government. While a People with learning disabilities have
assistant at her daughter’s school, her lot has been said about older people and been affected by coronavirus more.
husband a laser programmer. Their the support they need, we know many Information has not yet been properly
daughter has learning disabilities and disabled adults feel excluded from plans published by the government in an
epilepsy, and they have a teenage son. or guidance. accessible format even though we know
“Our daughter has no idea about People with learning disabilities are people with learning disabilities died at a
the concept of time and lives in the confused as rules and guidelines have rate 4-5 times more than other people.
present. This has made the Covid changed so often. There is a lack of People, families and paid supporters all
pandemic easier for us. support from the government and want better information so they can
“I am used to being at home. We spend a easy-to-understand official and media understand what will help people be safe
lot of time together without any problems. information. Families and paid supporters and live a good life as coronavirus carries
Paradoxically, an advantage for us is that feel they have been ignored too. on. They want good support too. n
we do not have many social activities. We have heard a lot of stories,
“We did not particularly emphasise the though, of how self-advocacy and Samantha Clark is chief
existence of Covid to our daughter. community groups have helped executive and Gary
Through constant warning and supervision, their members and each other. Bourlet is membership
I taught her to observe hygiene in stores. At the beginning of the outbreak, and engagement lead
“We found a procedure for washing some people with learning and self-advocacy
hands in a fun way online. My daughter disabilities in England had “do not spokesperson
always asks if she will have to wear a mask resuscitate” notices put at Learning
at a specific place or event, and will put it on them without them Disability
on herself once told. knowing or just England
“We encountered challenges. The care
of our daughter lies primarily with us. We
waited a long time for our Covid tests. Austria 24-hour care for those with profound
“When both of us were sick, we were A survey on Covid-19 disabilities with no support from outside.
most worried about what would happen mortality in care homes Later, it became obvious that most people
with the children in the event of our for senior citizens was living in institutions had been subjected to
hospitalisation. We could find no published in Austria in 2020 but findings much harsher restrictions than others.
information and nor could our GP or regarding any kind of accommodation for Some had been locked in for months, such
paediatrician. What really scared us was persons with disabilities were absent. as a six-year-old girl whose case was
the lack of information for patients. This illustrates the low significance of reported in the press, who suffered
Without the internet, we would have persons with disabilities during the tremendously because her relatives were
been lost. lockdown. They were overlooked – their not allowed to meet her for weeks.
NASA/Wellcome Collection/Christy Lawrance: cover image; Prof BJB Nyarko/GAEC: Ghana; Seán Kelly: market stall
“We are used to taking care of situation was not a public issue. In July, the Austrian self-advocates’
ourselves, but this has alerted us to the No one asked how disabled adults or network published a statement confirming
need to prepare for such a situation.” n children and their families coped with the this and demanding that people with
unpredicted breakdown of support services. disabilities were considered and involved in
Monika Mužáková is an associate Recently, some non-governmental all future efforts to fight the pandemic. n
professor in the Faculty of Education, organisations went public to talk about
Charles University, Prague. Translation by the problems experienced by people with Petra Flieger is an independent researcher
Iva Strnadová high support needs or families providing in Vienna and Tyrol

United States However, reports and experiences from learning and behavioural needs. Some large
of America within the disability community show care facilities severely limited contact with
In the US, the impact that, while they are similar to other family or outside support professionals.
of the pandemic crisis groups in many ways, people with However, in the midst of this
on individuals with intellectual disabilities intellectual disabilities are dealing with discrimination and excessive risk, glimmers
and their families can be seen in many particularly troubling circumstances. of hope have started to shine. It took a
ways as simply a specialised version of the As one advocate put it to me, the “one pandemic to learn that online technology
critical difficulties faced by other people. thing we deeply felt was that, as turmoil opens up ever greater possibilities for
The problems experienced by people and changes hit, policy went straight to independence and communication. The
with disabilities are the problems of ableism”. Reports emerged of doctors and advantages of smaller living arrangements
the isolated, the unemployed, the hospitals using the label of intellectual over large, congregate facilities have
chronically ill and the undereducated – disability, in itself, as a justification to end become even clearer. In the midst of
stuck at home, unclear about the rules, or never begin intensive care protocols. pandemic, community persists. n
deprived of contact with friends and Some schools asked for waivers from
family and with no end in sight for the legal obligations to provide education Philip Ferguson is professor emeritus at
daily disruption. programmes for children with complex Chapman University in Orange, California ▼

www.cl-initiatives.co.uk Community Living Vol 34 No 2 | Winter 2021 13