After two hours of waiting in an Emergency Room and watching others getting help before him, Johnny began to get frustrated. “How come they are getting to cut in line?” he asked with a sense of urgency and concern. “Umm… I am not sure. Let me go ask someone,” his sister-in-law, Trish, responded with uncertainty. As the third hour of waiting slowly approached, watching his sister-in-law get back in line, he began to rock back and forth as he always does when he gets nervous. He had been diagnosed with Down syndrome and Acute Respiratory Distress syndrome (ARDS) as a toddler and had experienced similar situations throughout his life. But, now 19, in the middle of pandemic, he had never gone this long without consistent medical care.
When she was finally waved over to an available receptionist, she was told that there was a shortage of medical equipment, as well as medical staff, due to the facility being near full capacity. They mentioned that in these conditions they often must make a judgement call on who to treat based on different variables that are also prioritized in the moment. His need did not weigh as much as other people who needed a ventilator. They could not help him right now. “So, what are we supposed to do?!,” asked Trish. The receptionist flatly apologized and produced another form. It was a waiting list. When asked how long they would need to wait, the receptionist shrugged her shoulders and apologized again.
Despite all of the progress that has been made for individuals with disabilities, an institutionalized level of ableism still exists. Take for instance, the notable example of a man who, after sustaining a crushed hip in a car accident, crossed paths with a doctor who did not find it medically necessary to
to work on the broken hip because he was already wheelchair bound before the accident. Currently, our society is in a very ambiguous place, with the healthcare system at the center of it all. If we were to look to the current news reports, we can see barriers like emergency room wait times, limited space in hospitals, and the rationing of differing types of healthcare. A reason to mention this in discussion is not to debate on values and politics, but, instead to point out that if able-bodied individuals without disabilities are now facing these struggles to receive treatment, where does that leave those with disabilities? Furthermore, it is important to realize that in a time of crisis that affects virtually everyone, those who have historically been marginalized may be affected in an unimaginable way. Like individuals with disabilities, people of color are also faced with varying types of implicit prejudice. A study conducted revealed that significant bias was related to issues regarding “patient–provider interactions, treatment decisions, treatment adherence, and patient health outcomes.”
Through these experiences, parents and disabled persons have to navigate the complexities of advocating for themselves in medical support and daily community routines. In order to understand how to advocate, we first need to know relevant laws that support individuals with disabilities. The Rehabilitation Act was one of the first laws established to prevent discrimination practices. A big part of this law is related to rights in the workplace and equal opportunity employment. The Americans with Disabilities Act (ADA) was put into law to support employment opportunities, access to public areas, and access to alternative communication. Another law is the Individuals with Disabilities Education Act (IDEA). It is important for parents to be aware of all the grants and supports the IDEA covers including individual education plans and 504 plans. Being able to understand these laws can help parents hold others accountable.
Additionally, education and awareness have been proven to be one of the most crucial variables in overcoming bias. To overcome it, we first need to understand it. A literature review specifically looked at the ways that Applied Behavior Analysis (ABA) could be used to help both understand and overcome different biases. Below are some techniques parents can use.
There has been a recent development in the use of ACT, Acceptance and Commitment Therapy, in a novel way to help understand and overcome biases. ACT involves a systematic approach that uses mindfulness and acceptance strategies to develop skills for goal achievement. Often used by practitioners to help teach different concepts to children, it is believed that a lack of perspective taking is related to generalized prejudice. Perspective taking strategies have been shown to be extremely helpful for individuals to gain more empathy for diverse groups of people. For example, writing a short paragraph about what a day in the life of someone else may be like is a wonderful way to train for perspective taking. Another potential option could be to create relationships with individual people lacking experience with disabilities, not just focusing on education in larger groups. A parent could find examples of individuals with disabilities in the media “who possess positive traits that contrast with stereotypes” or focus on traits beyond the stereotypes. Additionally, we need to teach our children to advocate for themselves against bias.
A team at The University of Oklahoma developed a curriculum for teaching self-determination and self-advocacy skills. Additionally, The Center for Parent Information and Resources lists several options to help support children in advocating for themselves. Parents can also pull in their community resources. There are several online and in person community support groups, including peer support groups. Many organizations for teaching self-advocacy also focus on other areas of their lives such as community or vocational involvement and are in line with an ABA strategy called “Behavioral Skills Training”. This strategy involves providing instructions, modeling, role-playing, and feedback. A parent can use a visual as their instructions, model what this looks like to community members, have their child practice it with them, and praise their child for appropriate instances of self-advocacy. One of the best things we can do for our children is listen to their concerns when they speak out and encourage them to give specific information to us.
The next time that Trish had to take Johnny to get medical care, a few weeks later, she decided to call ahead, calmly explaining the situation. She politely empathized with the overworked health care staff, giving them praise for their services on the front-lines, before referencing her own experience advocating for her loved one. Instead of being defensive and offensive, she opted for the role of a teacher, happy to help the staff become more aware of their accountability in the system, as proposed by legislation like ADA and IDEA. By the end of the call, she was able to secure a spot for her brother-in-law, with a reasonable wait time and no discouraging piles of paperwork. Not only that, but the health care worker also expressed their gratitude to Trish for her understanding and helping them become more knowledgeable and effective in their role of helping people.
“It’s my pleasure!”, Trish replied. “At the end of the day, we really are so much more alike than different, anyways.”
Here is a great Tedx Video from Judith Heumann!
ABOUT AUTHOR Holly Downs is the Director of Ethical Compliance at PBS Corp. and an instructor at Capella University. She is a certified behavior analyst with over a decade of experience in various populations.