Letter from the CEO

Over the last year, we have seen so many challenges and changes due to the global COVID-19 pandemic and civic unrest in the United States.

Unfortunately, those of us living with disabilities have faced many obstacles. Despite the feelings of hope that the vaccinations have brought us, we must acknowledge that since the COVID-19 outbreak was ruled a pandemic in March of 2020, approximately 1 million U.S. employees with disabilities, or roughly 1 in 5, have been dismissed by their employer. Even without the pandemic fueling additional setbacks in the area of employment, the employment rate for people with disabilities has remained persistently dismal since the signing of the Americans with Disabilities Act over 30 years ago.

Last year, as employers raced to identify solutions for their workforce to be successful working remotely, impact to our community was not necessarily taken into consideration. As employers look to the future of what the workforce will look like, weighing work from home, onsite or hybrid solutions, it is critical that we are prepared for the changes that will continue to impact how we work. We must give voice to the needs of our community.

In addition to continuing struggles on the employment front, people with disabilities have found it harder to gain access to medical supplies as those supplies often become scarce or reserved for those struggling with COVID-19. Civil rights came under fire as we fought to prevent COVID-19 health care resource rationing plans from mandating that people with disabilities be the last to receive access to care and lifesaving supplies, such as oxygen. These plans, filed in multiple states including Pennsylvania, created guidelines without input from the disability community, discriminated against our community and jeopardized the lives of people with disabilities.

In addition to medical supplies, the pandemic impacted access to general health services required for people with disabilities, such as personal assistants. Due to safety precautions and the easy spread of COVID-19, personal assistance resources became scarce, impacting the quality of life for people with disabilities. Some people with disabilities have experienced difficulty in getting medication delivered, due to inability to use transportation, during the quarantines. Our friends in the deaf community are dealing with the added difficulty of communicating needs with healthcare workers and retailers wearing masks.

The lack of human contact caused by social distancing has fueled feelings of isolation for people with disabilities, adding to societal stressors for people in this community. As increased feelings of morbidity and mortality have risen, even those without disabilities are experiencing situational mental health concerns, with expectations of lasting effects on the mental wellbeing for many. According to the CDC, approximately 40% have reported at least one adverse mental health condition.

Communication of these issues vital to our community is imperative. We must be ever vigilant, taking the time to educate ourselves and others. We must act as one large family. It is only with quick, decisive action and a united voice that we can ensure success and civil rights for our community. We must come together to prevent future civil rights violations.

We must take action that includes speaking out against the brutal treatment and killing of our friends and family in the black community. These atrocities must end. #BlackLivesMatter and #BlackDisabledLivesMatter remind us of the intersectionality of the human existence. As a person with epilepsy, I am well aware of the danger for someone having a seizure when untrained or biased police officers are involved. I can well imagine the outcome for someone who is Black, experiencing post-seizure activity. These symptoms, such as vomiting, disorientation and clumsiness can imitate the state of someone who is drunk. Moreover, they can limit the ability to communicate, making it difficult to communicate the need for anti-seizure medication. In these critical moments, response can determine life or death. Yet many police officers are unprepared and unable to tell the difference between a crime and a seizure. When a person is Deaf and does not respond to the shout of a police officer, what is an appropriate response? When you add in the intersectionality of people with disabilities with the life experiences of members of the Black community, what happens? When bias and hatred meet ignorance and stigma, the results are devastating.

We cannot remain silent on these matters. We must take action to change the direction of our society, to point our compass toward justice, inclusion, and equality. We can start by being active in our community, by seeking knowledge and supporting each other.

Reach out! Talk to one another! Feel the power or the disability community!

Lead On!

Joyce A. Bender