Celebrating Developmental Disability Awareness Month
by Jason Harris, Burton Blatt Institute (BBI) at Syracuse University
As someone who has a developmental disability, I was unaware that there is a Developmental Disability Awareness Month. I am pleased there is a Developmental Disability Awareness Month to draw attention to this important topic. It was created as an annual event in 1987 by President Ronald Reagan.
In some ways the term developmental disability itself is vague. Unlike some categories of disability, developmental disabilities are not only described by a specific disability but also by the age when the person became disabled and how developmental milestones were affected. Developmental disabilities can affect a person’s cognition, motor performance, vision, hearing, speech or behavior. Some developmental disabilities may be intellectual disabilities. This is understandable since the term intellectual and developmental disabilities is widely used. What defines a developmental disability according to the Arc is an impairment that occurs before the age of 22 that affects a person’s self-care, learning, mobility, self-direction and other abilities.
Developmental disabilities only occur in childhood. Disabilities that occur in adulthood are considered acquired disabilities. A person with developmental disabilities can have both an intellectual disability and a physical disability. Developmental disabilities begin anytime during a child’s development and usually last throughout a person’s lifetime. Although most developmental disabilities begin before a baby is born some can happen after birth due to injury, infection, or other factors. Some examples of developmental disabilities include attention deficit hyperactivity disorder (ADHD), autism, cerebral palsy, muscular dystrophy, learning disabilities, Tourette’s Syndrome, blindness and visual impairments, deafness and hearing loss, and other disabilities.
Disability Awareness Is Not Enough
Most Americans know someone with a disability, and so they may believe they know what “having a disability” means. They may have family members, friends or coworkers around them who have disabilities. Many people without disabilities may feel that they understand what living with a disability is like, that they have “disability awareness.” It is important to understand that my wants, needs, and personal experiences as a person with a disability are not the same as how my family and friends perceive my needs.
We must realize that disability awareness is not enough. Awareness is the first step, but it does not bring about equality, acceptance, appreciation, and understanding. Awareness means we know something exists. The word “awareness” is often used to talk about an issue or a disease. We have awareness of recycling, or awareness of cancer. Even with specific disabilities, we may have awareness. We may know that 1 in 59 peope have autism. This knowledge does not lead to successful life outcomes for those who live with autism. Instead, we need to focus on disability acceptance and appreciation that results in someone being able to live a good life.
Disability acceptance also means that disability is not something to overcome or fix. It is part of the person and possibly their main identity. Disability acceptance is full acceptance and understanding of differences. It means that we make sure that people with disabilities do not feel “weird,” or less than people without disabilities because of their needs or ways of doing things. It should also mean that people with disabilities are able to make choices, vote, have friends, be part of the community, have a love life, jobs, hobbies, chances to advance, and many things that are offered to other people. It is also not just making sure these things happen for the person, it is also providing the support they need to make their own choices. Disability acceptance is treating people with disabilities as equal, rather than stigmatizing what they say or do as being less than what a “normal” person does.
Disability Acceptance is Changing Society
In the U.S. and other countries, the legal rights of people with disabilities are expanding as disability acceptance becomes an integral part of modern society. This has in some sense happened since 1987 with the creation of Developmental Disability Awareness Month as well as the passage of the ADA in 1990 and the Olmstead decision 1999. The Olmstead decision says that unjustified segregation of people with disabilities violates Title II of the ADA and constitutes discrimination. It also means that state and local governments must provide community-based services to people with disabilities.
Disability acceptance also includes accepting that people with disabilities may have challenges and their own way of functioning in the world. The ABLE Act allows people with disabilities to save money in a fund that doesn’t affect their Social Security benefits, so they can be more financially secure. These laws are important because they meet important basic needs that will lead to more acceptance, understanding and appreciation. These laws make sure people are not segregated by physical or by economic barriers. More still needs to be done to ensure that the goals of Olmstead and ABLE are met. We must go beyond compliance with the law to make sure people are accepted and appreciated with supports, friendships, and the opportunity to bring their experience and skills to the table.
We can go further, though. Self-determination means making our own decisions. Often, people with disabilities are denied choice. This is especially true when self-determination and competency are thought of as an all-or-nothing deal where you are either fully competent or deemed completely incompetent. Tools like supportive decision-making are important. Supportive decision-making is a way for people with disabilities to make decisions by talking with someone you trust about individual needs and choices in order to reach a personal decision. I personally use supported decision making since I am a verbal thinker and I sometimes need support fleshing out ideas. Supported decision-making is something we all do when talking to someone else about their opinion or discussing issues online. For me, I talk to people about big life decisions such as jobs and friendships, but also things such as finances, meal prep, and help with making certain executive function decisions. The ability to have support, talk over issues, make decisions and have self-determination are an important part of being an adult and are essential for a contented life. They are important for being able to live in the community and to live independently or interdependently.
It is important to have a community that supports people with disabilities. This gives us ways to have social networks, purpose, and organic supports. It is not always easy to find supports or feel confident. To be in systems that make it easier to get support and to advocate for myself is important for me in my own personal growth. This allows me to not only be in the community but to be a part of it in a meaningful way. The strides that have been made and continue to be made to support me and others with developmental disabilities are not only through awareness but through acceptance of those of us with development disabilities and appreciation of what we bring to the table.
- National Association of Councils on Developmental Disabilities (NACDD). Developmental Disability Awareness Month - #DDawareness2020. www.nacdd.org/ddam1
- The Arc of Indiana. What is a developmental disability? arcind.org/families/developmental-disabilities-definition/
- National Institute of Mental Health (NIMH). Statistics: Autism Spectrum Disorder (ASD) Definition and Prevalence. www.nimh.nih.gov/health/statistics/autism-spectrum-disorder-asd.shtml
- U.S. Department of Health and Human Services (HHS) Office for Civil Rights (OCR). Serving People with Disabilities in the Most Integrated Setting: Community Living and Olmstead. hhs.gov/civil-rights/for-individuals/special-topics/community-living-and-olmstead/index.html
- Social Security Administration (SSA) Program Operations Manaul Systems (POMS). What is an ABLE Account? secure.ssa.gov/apps10/poms.nsf/lnx/0501130740