First, I want to acknowledge that having the ability to ponder these things represents a certain privilege – I am not scrambling to put food on the table or keep a roof over our heads, and we don’t have kids trying to navigate Zoom school. I’ve been working part time since last March, and been out on partial long-term disability with symptoms of long-haul COVID. That’s given me a lot more free time to think. Here are some of my thoughts.
Living in Connecticut with a disability has never been easy. Being a disabled person in Connecticut during COVID has been downright infuriating. At the beginning of the pandemic, we saw many workplaces and schools pivot to remote learning and working, doing something that many of us had asked them to do for years as an accommodation, but been denied because it represented an unreasonable request, an undue burden, or a fundamental alteration. When we needed it, it couldn’t be done. But when it was needed for everyone, suddenly it was entirely possible.
If we lived in nursing homes or group homes or inpatient psychiatric facilities, in-person visits were shut down overnight. We may not have understood what was happening or why -– information that was being shared was not always accessible to us. We saw working groups and advisory groups assembled around virtual tables to which we were not invited, even though our community has long stood for the concept of “nothing about us without us.” Inviting one (or two) of us to represent a community that is not a monolith in either its needs or its ideas was woefully insufficient.
We saw hospitals produce rationing triage policies that specifically said we could be denied life-saving care based on our disabilities. We saw people saying “COVID only hurts old people and people with pre-existing conditions.” We observed people unable to say the word disability – unable to recognize our humanity.
Reopening plans told us to stay safe by staying at home – even during the phases when the world would reopen for everyone else. Not that we ever made it to phase 3 in Connecticut, but if you think we didn’t notice that folks were perfectly content to create a new normal which excluded us, you’d be wrong. We noticed.
We reached out to you for help. We wrote letters. We joined protests (virtually, for the most part.) Were you listening? Were you paying attention?
The state hired a multimillion dollar consultant to write a report on what went wrong in nursing homes. Yet another working group with multiple subcommittees was established. Was anyone who identifies as a person with a disability appointed to serve? Anyone who may have lived in a nursing home until they were able to access the supports and services under Money Follows the Person so they could live in the community again?
There was one recommendation in the Mathematica report that talked about the use of long term services and supports and home- and community-based services to keep people OUT of nursing homes in order to mitigate the spread of COVID. In the recommendations from the various committees of the nursing home accountability and oversight working group, that recommendation is not even mentioned.
Rest assured, if someone with disabilities had been included in that working group, it would have been brought up. Our community has been saying for years “our homes, not nursing homes” and, during a global pandemic, when people with disabilities (because EVERY resident of a nursing home is legally a person with a disability) were dying by the thousands, that strategy was ignored.
To add insult to injury, even though nursing home residents and staff were among the first to get access to the vaccine, the governor and other elected officials were still considering continuing the immunity that nursing homes enjoy, until very recently. I am grateful to be represented by a legislator who proposed the bill to end the immunity. While granting such immunity was appropriate at the beginning of the pandemic, the strategies to prevent infection are now known, and there is no reason to continue to provide this protection.
The personal care assistants that provide direct service to so many of us who live in the community had to fight to be considered front line health care workers in order to get access to PPE, and to get access to vaccines, even though they have just as intimate regular contact with patients as hospital workers — but without the elaborate infection control equipment and protocols available and followed in hospital settings. The disabled people who are their employers? Not currently eligible unless they met the age requirements.
To this day, the state, having repeatedly been asked to do this by a broad coalition of disability advocates starting in March, still has failed to issue statewide standards regarding rationing of hospital care during the pandemic, abdicating any responsibility and leaving it to individual hospitals to issue their own guidelines –predictably resulting in dramatically varying policies. Even if we are able to vaccinate enough people to obtain herd immunity before mutations of the virus bring another spike worse than the current one, we know another pandemic will come. Why does the state feel no need to take action to assure that people with disabilities (as well as older adults and Black, brown, indigenous and Asian people) will not be discriminated against, when most other states did so long ago?
People with disabilities had to fight to be accommodated at hospitals. While we understand that hospitals needed to limit the number of people present in order to reduce the risk of virus transmission, too many hospitals responded to requests for accommodation as requests for “special” treatment. That’s what happens when the needs of disabled people are framed as “special needs.” They are human needs; they are different needs because of the person’s disability. The Americans with Disabilities Act has been the law of the land for more than 30 years; it requires that those needs be reasonably accommodated.
Let’s not forget that COVID deniers and so-called “freedom” fighters tried to weaponize the ADA by printing off fake “ADA” cards that they found on Facebook. People with disabilities alternated between laughter at the foolishness and anger at the boldness as people without disabilities tried to take advantage of a law enacted to protect our civil rights so some of these able-bodied people could go to a store without wearing a mask and terrorize essential workers trying to do their jobs. All that, while the system failed to accommodate those of us who really could not wear masks as a result of actual disabilities, and sought an alternate way of receiving services.
While this new on-line world is more accessible to many of us, for disabled people living in poverty (because, for many of us, being disabled means being poor), without unlimited data plans or access to WiFi, barriers remain.
Schools often failed to meet the needs of disabled students before the pandemic. Many more of these needs continue to be unmet during the pandemic.
Distribution of vaccines to people who reside in state-operated congregate settings is only starting to happen now – even though we have known for quite some time that living in a congregate setting puts people at higher risk, regardless of age. None of the people who died in the Department of Corrections custody were over 75. A strictly age-based criteria for vaccine eligibility by definition will leave out the people who, by virtue of risk factors related to their race, ethnicity, or disability, do not live to see the age of 65, much less 75 – so all we’ve been doing is reinforcing existing health disparities. #HighRiskCT? Good luck.
So what happens next? When the world returns to “normal” – a before-times normal that wasn’t working for so many of us – will many of the services that provided an increased level of accessibility (for some) continue to exist? Will livestreaming of events continue to occur once people can gather in theaters and concert halls again? Will students have the opportunity to attend school from home if they need to as an accommodation of their disabilities? Will disabled workers be able to work remotely?
Many disabled people lived lives of isolation in the “before” times. We noticed how quickly some of you couldn’t handle a couple of weeks of staying home. We could have given you tips and life hacks, but maybe it didn’t occur to many of you to ask.
And now, as we enter the public hearing phase of the current legislative session, we have elected officials who claim we are incapable of reading a bill. If anyone pays attention to the language of a bill affecting us that legislators use, it is us – because we are likely to bear the burden of whatever policies get enacted. Some people claim that we are “too emotional” or that we exaggerate the consequences of what we believe are bad policy proposals.
If you listened to us a year ago, six months ago, last week – we were telling you what needed to change. We’re tired.
Want to improve the mental health of at least one disabled person during the pandemic? Listen to what disabled people are telling you.
Kathleen M. Flaherty is Executive Director of the Connecticut Legal Rights Project, Inc.