“Hard to trust”: Challenges trusting information and support during the COVID19 pandemic for people labeled/with intellectual disabilities.

Written by Kuri, E., Lin, A., Seth, P., Head, K. J. (2021).

September 16, 2021

The following blog post was written exactly one year ago, during the COVID-19 pandemic in Toronto, Ontario, Canada. The writing was based on interviews between DiStory group research assistants, survivors, and younger generation self-advocates.

The theme that this piece of writing reflects on, focused on shared perspectives on the topic of trust, particularly how hard it was to trust sources of information about the virus and community health guidelines, healthcare and political leadership, and health care planning toward a potential vaccine.

At the time of writing this introduction, vaccinations have been distributed widely across Ontario to individuals above the age of 12. However, we are now in a fourth wave of the pandemic in Ontario and more-contagious variants of the virus continue to circulate.

Some individuals have still not had access to the vaccine, some have medical conditions that prevent them from getting the vaccine, some have personal reasons for choosing not to be vaccinated such as not feeling safe. Personal choice surrounding vaccination and ongoing mandates to be vaccinated are controversial topics. Those who are not currently vaccinated may face increased risk of contracting the virus and also face social exclusion and may be barred access to services in a neoliberal risk-focused society.

Photo by Dylan Ferreira on Unsplash

Community restrictions have lifted a great deal however many people living with disabilities continue to experience limitations on their social activities and lifestyle.

Community restrictions have lifted a great deal however many people living with disabilities continue to experience limitations on their social activities and lifestyle. For example, accessible community spaces where our group used to meet, continue to be restricted with respect to public gatherings. In the coming weeks, another round of interviews with group members will take place, allowing us to continue bringing visibility to ways that that our group has experienced this pandemic since the first lockdown occurred in our province in March of 2020 (Nielsen, 2020).

September 16, 2020

Information relating to the global Covid19 pandemic has been widespread and sometimes contradictory. Health guidelines have varied across countries, provinces, and local municipalities. There has been an overwhelming amount of information to process and various sources of information to manage from a critical perspective. These are challenging tasks for non-disabled folks. For people living with intellectual disabilities and/or limited access to technology there may be added barriers to accessing accurate and up-to-date information.

Photo by Emmanuel Ikwuegbu on Unsplash

For people living with intellectual disabilities and/or limited access to technology there may be added barriers to accessing accurate and up-to-date information.

For survivors of institutions created for people living with intellectual disabilities, it has also been difficult to know what information to trust and what guidelines are truly in their best interests, particularly if that information comes from the government or health authorities. Survivors of institutions often have complex traumatic histories resulting from ways they were devalued and dehumanized within contexts of care they received while living and working in segregated, government-funded facilities across Canada.

In this post, survivors and younger generation self-advocates share their thoughts and experiences relating to the Covid pandemic as a way to help non-disabled folks understand the additional challenges they’re facing, particularly with respect to the topic of transparency and trust.  

Isolation and access to information

At a time when both disabled and non-disabled communities are hearing the phrase we’re all in this together, the reality for many people with intellectual disabilities is that we are living in isolation, depending on television, radio, internet, YouTube, communication with group home staff, educators, or family members to keep us up-to-date with what is happening in the world around us, and what safety measures are required of us to keep ourselves and others safe. We do not all have the same level of access to information. One self-advocate [SEAN] shares

    The staff here are on top of it and they are great. They make sure to put up information in the house and on the bulletin boards. But I wish I could go to the library and use the Internet too so I could look up COVID-19. The only computer in the house is in the staff office. And we can’t go to the library and use the computers and Internet”.

It is also important for some people to have someone to support them in understanding what they are seeing or hearing, to help them to feel safe. A survivor of an institution expresses that [CINDY]

    sometimes they don’t understand what is happening. Some people with disabilities have also experienced so much trauma.” 

Photo by Tim Mossholder on Unsplash

History impacts present experiences of care and trust in potential vaccines

So what is really happening, how can we keep ourselves safe, and who can we trust? Historically the Canadian government and health care providers sanctioned and carried out methods of sterilizing people with disabilities (Rossiter & Clarkson, 2013). Now we are hearing stories that people with disabilities are being pressured by doctors to sign Do Not Resuscitate orders so that they can save ventilators for people that they think have the right to live (Alexiou, 2020). One survivor [Marie] shares

    Well you know it’s hard to trust anybody because of the way they treated us in the past… Did you hear that some doctor asked some person with a disability to sign a DNR? Like that’s not right. Who are they to play God? That’s up to God to take a person’s life… not the doctor’s.”

Disabled people continue to be disappointed by government actions, or lack thereof. On one hand we are told that the government is there to care for us, and on the other hand the government hasn’t always made decisions that help us to feel safe. A survivor remarks [Antoinette] The government is not right half the time… Especially when they wanted to open that damn institution again…we do not want it… Because it brings bad memories…”

Photo by Tim Mossholder on Unsplash

A younger generation self-advocate shares [Kevin] “I’m upset with the pandemic right now. It should’ve never happened. The government should have never let it happen.”

Although there is a desire for a vaccine to ensure that people are safe from getting sick and can return to fulfilling activities, some disabled people may continue to feel suspicious about how vaccines will be distributed and if the disability community will be treated differently than those perceived to be able-bodied/minded. Two survivors share their concerns about a potential vaccine: [Marie and Antoinette] “I don’t know… it would depend on if they limit the vaccine to certain people you know…” “It’s hard to say… They [disabled people] could ask questions about it you know…” “To be honest with us…” “Yeah… just to tell us what’s in it and you know…

It is hard to question people in power

It is hard for intellectually disabled individuals to ask questions. We are aware that people in positions of power treat us differently and don’t listen to us. It is not safe to question authority figures, particularly if you are also racialized, living in poverty, identify as queer, trans, or female.

It is not safe to question authority figures, particularly if you are also racialized, living in poverty, identify as queer, trans, or female.

A survivor comments [Antoinette] “I see on the news how people get treated and that’s not right. Like those police men, they have no right to pick on people that have disabilities you know…” A younger-generation self-advocate shares his personal experience [Sean]: “It’s very hard living with an intellectual disability because of the police. They don’t know how to interact or understand people having intellectual disabilities. Like the last time I got arrested I told them I lived at (location redacted), but they took me to the police station and booked me. They didn’t even call my staff to say ‘oh (name redacted) did this and we booked him’. It’s very hard.”

Taking back autonomy: Questioning and collaborating toward social justice 

The Covid19 global pandemic has placed a spotlight on ways that western society values some lives more than others. Awareness is being raised about what needs to change and the disability community is fighting back against ableist ways of thinking. People in positions of power like government policy makers, police, and health care providers need to have more understanding of our situations and need to treat people with intellectual disabilities fairly.

A self-advocate states [Doreen] “I still wish that people [with intellectual disabilities] would have more understanding of it [covid19] because I still don’t have enough understanding and I wish that they [disabled people] would be recognized that they have troubles, but more people with intellectual disabilities need to be recognized, and I would like those things to change. It would be really something if somebody [who identifies as disabled] could become a politician.”

A survivor shares an experience of collaboration in the context of hospital visits for people with intellectual disabilities during the pandemic:

Photo by Jakayla Toney on Unsplash

She told me that disabled people have a hard time when they go there. They’re scared. They don’t know who to talk to.

“She told me that disabled people have a hard time when they go there. They’re scared. They don’t know who to talk to. They don’t let their social worker come in with them. They should have their social workers be able to come inside to explain to them that they need help. Now they’re letting them do it because we’re having a few meetings with one of the ladies that runs the (organization redacted). There was a good lawyer that was talking about it and she said, ‘you are right! You should have your social worker helping you to come in.’ We’ve had lots of meetings on the phone and we’ve been talking about these things. We feel sorry for people with disabilities, but I just hope they don’t open any more institutions like they did to us in Orillia. Let them allow people to be on their own but get them help. Get them some caregivers to help them out a little bit.”

We are calling for justice and change through increased awareness and recognition of the unique need of intellectually disabled people.

Although some of us [Robert] feel that health care providers are doing a good job supporting some people during this pandemic, it hasn’t been clear that any plans exist to directly support people with intellectual disabilities. As a result of this pandemic and previous injustices, we are calling for justice and change through increased awareness and recognition of the unique needs of intellectually disabled people.  Those in positions of power must collaborate with us to develop equitable policies that keep us healthy and safe.

References

Alexiou, G. (2020, June 23). Doctors issuing unlawful ‘Do Not Resuscitate’ orders for disabled Covid patients ‘outrageous’. https://www.forbes.com/sites/gusalexiou/2020/06/23/Unlawful -do-not-resuscitate-orders-for-disabled-covid-patients-outrageous/#26152fdc6cf1

Nielsen, K. (2020, April 24). A timeline of COVID-19 in Ontario. Global News. https://globalnews.ca/news/6859636/ontario-coronavirus-timeline/

Rossiter, K., & Clarkson, A. (2013). Opening Ontario’s “saddest chapter”: A social history of Huronia Regional Centre. Canadian Journal of Disabilities Studies, 2(3), 1-30. 

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