Individuals with disabilities face Covid (Long Read)
Hope on its way
With the COVID-19 vaccine now available for frontline workers, hope is on the horizon. We can finally see a light at the end of this very long, dark tunnel that has transformed our lives over the past year. Hardship, grief, loss, disappointment, and fear have been overarching themes for nearly everyone as the pandemic stole our sense of normalcy. But for individuals with disabilities, who often experience heightened levels of community isolation and healthcare discrimination even in the absence of a public health crisis, the challenges have been particularly difficult to manage. By understanding the unique issues individuals with disabilities face due to Covid problems, we can move forward stronger as a community better equipped to address these challenges.
We must recognize that people with disabilities are at a higher risk during this pandemic. While simply having a disability doesn’t by itself put someone at a higher risk for COVID-19, many people with disabilities do have specific conditions that make the virus more dangerous for them. For example, many people identify as having a disability because they have a diagnosable medical condition, sometimes making someone immunocompromised, or more susceptible to becoming sick. Communities should prioritize the health needs of people with weakened immune systems and ensure that medical supplies and equipment are available to them. What we have seen from the community during this pandemic is the opposite. Some hospitals are actually discriminating against individuals with medical conditions and disabilities more than ever before in history by denying them treatment when they arrive sick to the hospital, dangerously operating under the assumption that individuals with disabilities have lower qualities of life and therefore should not be at the top of the line for medical access.
Disability advocates would call this mindset horrifying, to say the least. Medical services may be limited, but the presence of a disability should not be used as justification for treatment denial. In other words, it should not be in the hands of powerful hospital administrators (likely without disabilities) to decide that individuals with disabilities are living at a lower quality of life than non-disabled individuals. If you disagree with that statement, check your ability privilege, and consider the internal bias you may hold against this population. Remember that disability is a socially constructed marginalized identity that illogically disadvantages people because of historical oppression. It’s no wonder that a series of lawsuits followed when community members started noticing treatment discrimination. These social events shed light on the underlying misconceptions about people with disabilities in society. More than 30 years after the Americans with Disabilities Act, it is outrageous for this type of discrimination to still occur and it speaks volumes about the essential need for increased education and advocacy on inclusiveness, ableism, and disability rights.
More challenges remain
Another challenge for this population during the pandemic has included accessing regular medical services and equipment maintenance (not related to COVID-19). Many people with disabilities have had to cancel their physical or occupational therapy appointments, forgo necessary medical appointments, and delay their equipment needs because service providers have limited their offerings. Depending on the medications needed, and what kind of health insurance a disabled person has, just getting regular refills in a timely manner has been a major challenge during this public health crisis.
In addition, some people with disabilities have struggled to isolate themselves as much as other people, because, for example, people with significant physical disabilities might need to rely on regular, hands-on help from other people to live independently, access their communities, or assist them with managing their health and wellness. For example, individuals with physical disabilities who rely on personal care assistance for their independent living cannot participate in social distancing in the same way that able-bodied individuals are able to. In addition, some people with disabilities who rely on caregivers have actually lost their caregiving assistance because many caregivers have elected to receive unemployment from the government instead of continuing to provide caregiving services. Our community should be responding with alternative solutions for helping to mitigate some of these problems, such as providing in-home emergency care options for disabled individuals who have suddenly lost their caregivers because of the pandemic.
For others with disabilities, cleaning their homes and washing their hands extra frequently can be difficult, due to physical impairments or environmental barriers. Even drive-up COVID-19 testing in the community may be impossible if you rely on accessible transportation services. Our community has not responded to these issues in ways that have created an equal playing field for individuals with disabilities. This is another way this population is exposed to greater pandemic risks.
Communication barriers can also be a problem for people with disabilities who need to have information presented in an accessible format, such as American Sign Language or text-to-audio software. Getting information about COVID-19 in a timely manner has been more difficult for people with vision or hearing challenges, as popular news sources have not always been accessible, especially when information has been changing very quickly over the past few months. Many people that need to have information presented in accessible formats have really struggled with getting the most up-to-date information quickly. You would think that presenting information in accessible formats would be one of the most basic changes our community leaders could make to be more inclusive to individuals with disabilities. Again, the lack of accessible formatting sheds light on the underlying misconceptions about disability needs in general. Another communication barrier, in general, has been people who rely on reading lips to engage with people on a day-to-day basis… try reading lips with masks on – it’s a problem. Some innovative groups have been producing masks with clear materials so that lips are visible through the masks. It’s an awesome solution, but we still have people struggling to access these. It would be helpful if this type of innovation was more widespread or acknowledged on a larger scale by community leaders.
Independence is fading
Finally, people with disabilities have had to relinquish their independence during the pandemic. Many have had significant disruptions in the services they need to live their full independent lives because of COVID-19-related financial cutbacks, the closing of services, staff limitations, and inability to access the community as they normally would. For many people with disabilities, the disruption in services or normalcy in their communities has led to increased feelings of being isolated or “stuck at home,” which can worsen pre-existing feelings of isolation experienced by people with disabilities prior to the pandemic. It is common for people with disabilities to feel isolated and alone in their reality because they exist in the world as a marginalized group – so it makes sense that the pandemic could very much worsen feelings of isolation for people with disabilities. Thankfully, mental health services are available to help support people during this time, but many people with disabilities struggle to find therapists who are educated, experienced, and trained on the specific considerations that affect people’s disabilities, including disability culture, etiquette, facts, and effective treatment modalities. As a wheelchair-using therapist living with muscular dystrophy, I am in the minority as a professional.
Although our community has begun to open up services and people feel hopeful again with a vaccine available, many people with disabilities are still struggling to reclaim the independence they had prior to COVID-19. Many people are trying to adjust back to normal life, but adjusting back to normalcy can be a process that takes time. How we as a community respond to these challenges for people with disabilities will determine how this population will be perceived and treated for years to come. It is past time for disabled people to be considered equal citizens, and yet we still have monumental systemic issues that maintain their marginalized status. Creating spaces where meaningful dialogue on these issues can be discussed openly is critical. Allowing the voices of individuals with disabilities and their family members to be elicited, heard, and valued is essential. Without including this population in something as substantial as a global pandemic, we are ignoring the needs of over 1 billion people on the planet (not to mention their family members or friends who will be equally outraged at the continued inequalities). To be a part of the conversation that focuses on positive change, start by having a conversation about the pandemic with someone you know living with a disability. I bet you will learn a lot.
Lauren Presutti, founder of River Oaks Psychology, is a licensed psychotherapist, disability activist, speaker, educator, and community leader. Diagnosed with Muscular Dystrophy at age two, Lauren has been using a power wheelchair since she was five years old. Her firsthand experiences revealed that traditional mental health professionals rarely have a lifetime of knowledge and experience to work effectively and truly connect deeply with those affected by medical conditions, chronic illnesses, and disabilities. Lauren’s training and knowledge of empowerment, inclusion, resiliency, mental health, ableism, disability, and related topics have motivated her to become a global change agent.