The presumption of competence is the most basic right upon which all others are founded.
By Gretchen Ward, MS, OTR/L
In 1946, the World Health Organization identified “the highest attainable standard of health as a right to every human being.” But what does that mean for people with disabilities?
Often individuals with disabilities, especially those with cognitive limitations, are left out of the conversation regarding their own health, happiness, and right to work and live as they choose. It has only been within the last 30 years that organizations have begun to review and develop policies surrounding the rights for people with disabilities. Within the disability rights community, the movement is solidified with the phrase, “Nothing about us, without us.”
Simplified, this means each person is entitled to their own “Voice and Choice” about their care, living conditions, finances, and health. Every person, regardless of disability or need is entitled to be an active agent in their own life. How can we support this movement in our own lives with the individuals we live and work with?
One of the main ways we discuss people with disabilities is in terms of access and accessibility. If we can provide equal access to opportunities, we will achieve true inclusivity. Though accommodations for physical and sensory-neural differences (e.g. hearing and vision) such as ramps, closed captioning, and braille have become mainstream since the passing of the Americans with Disabilities Act (ADA), individuals with cognitive differences, such as focus, comprehension, time management, organization and/or emotional regulation, continue to be marginalized. They often face higher rates of poor health and are frequently left out of conversations regarding their own lives.
We must do better. The first step will be to acknowledge the inherent competence of individuals regardless of presentation.
One of the reasons people with disabilities were institutionalized and left out of human rights considerations for so long was because as a result of their disability, they were deemed incapable of basic competence and in need of “care and protection.” However, in an effort to protect these individuals, we have unintentionally silenced them. Research has shown this increases their vulnerability to undiagnosed health issues, exploitation, and abuse.
To prevent these inequities and potentially deadly outcomes, we must presume competence and honor every attempt at communication. MyGuide users call it having their own voice and choice. This is the most basic human right upon which all others are founded.
As a child of a parent with a physical disability, I often observed how medical professionals would first consult with the family rather than my dad about his care. Though nothing was wrong with his voice, they would need assurance from first my mother and later myself to speak to him when we were in the room, just because he couldn’t use his arms and legs. For individuals who are non or minimally speaking, they are rarely given the opportunity to express their choices or advocate for themselves. Some are content to sit quietly and allow others to make decisions for them. Others may scream or yell and present with “uncooperative behaviors” when their needs aren’t being met or they can’t express themselves. These individuals often face further trauma and marginalization, because instead of trying to understand what they are trying to say, we push them aside or isolate or restrain them. What if instead, we provided opportunities for them to explain what they mean by giving them choices in a way that they can respond to? For example, we had a client who was not given access to coffee because his staff was afraid it would burn his throat or cause him health issues. Lack of opportunity to get his preferred drink led to him eloping across the street to take the coffee from a local office. Once he was given MyGuide and opportunities to get the coffee he wanted, he no longer needed to go steal it from across the street or drink it down in one gulp. What we learned from this experience was the “behaviors” we were seeing were the result of his experiences in his world: “Coffee was forbidden and therefore I must drink it as quickly as possible before it is taken away”.
Understanding the world around us and interacting with it in meaningful ways is complex. There are so many steps to the processes that allow us to make a choice or to express a thought. There are underlying sensory and processing barriers that we can never see, but what we can do is meet each person with the expectation that they know their own wants and needs better than we do.
Technology paired with human connection has the power to help us bridge those gaps. During the recent pandemic, we all turned to our virtual communities to stay connected. We talked on the phone, Facetime, Zoom, Google Meet and created new pathways to stay connected, like virtual game nights and group movie watches. People with cognitive differences may not have access to standard technology, and if they do, may struggle to navigate the multiple steps to connect to an app or a website – including knowing where to start.
In today’s society, we cannot be truly inclusive unless we provide pathways to accessing technology for people with cognitive disabilities. I hear all the time that my clients are great at navigating YouTube or playing video games but can’t check their email or use their calendar. It is our responsibility to present access to these tools in a way that is meaningful to every person.
Much like my example of the user that learned he could use his technology to request a preferred beverage that changed his whole demeanor, learning that you can control your own schedule or communicate with your friends holds power, but requires special consideration to become available to all people. The right to use my technology to learn about my world and connect with individuals of my choice gives me power. It allows me to make informed decisions, meet my needs for health and wellness, connect with others, and express my desires.
When we know better, we must do better and the only way we can do this is by creating pathways to unlock the voice and choice of every individual regardless of disability to provide them with the opportunity to pursue their own happiness, not someone else’s idea of what their “pursuit of happiness” should look like. Celebrate Human Rights Month by taking some time to think about how you can empower the people with disabilities in your life with their own voice and choice. Check out the Public Library – there’s probably a Guide for that! 😉