Why is developmental disability awareness so important? It’s a vital step towards equity, inclusion, and representation. In this post we are taking a brief look at the long history of the mistreatment of people with disabilities BEFORE awareness and advocacy were “a thing”.
WHAT IS A DEVELOPMENTAL DISABILITY?
Developmental disabilities are a group of conditions due to an impairment in physical, learning, language, or behavior areas. These conditions begin during the development period and may impact day-to-day functioning, and usually last throughout a person’s lifetime.
WHAT CONDITIONS QUALIFY AS DEVELOPMENTAL DISABILITIES?
According to the CDC the following conditions are classified as Developmental Disabilities:
- Autism Spectrum Disorder (ASD) – ASD affects how individuals communicate, interact with others and experience the world.
- Cerebral Palsy (CP) – CP is a group of disorders that affects movement, muscle tone, reflexes, posture, balance, and coordination.
- Intellectual Disability (ID) – ID is characterized by a significant cognitive or intellectual impairment that impacts an individual’s ability to function in everyday life.
- Attention Deficit Hyperactivity Disorder (ADHD) – ADHD is a neurodevelopmental disorder that affects the brain’s regulation of behavior.
- Learning Disabilities – Learning Disabilities affect the brain’s ability to receive, process, store, and respond to information.
- Hearing Loss – Hearing loss is when any part of the ear is not working in the usual way.
- Vision Impairment – Vision loss is when a person’s eyesight cannot be corrected to a “normal” level.
Each of these conditions is vastly different and presents differently among individuals. Some of these conditions you may suspect by seeing a person move or interact with others, some are primarily internal struggles and challenges that you may never know about unless a person opens up to you and shares their experiences. Each of these developmental disabilities exists on a spectrum. People with the same diagnosis will regularly have very different experiences, symptoms, abilities, and challenges. Developmental Disability diagnoses are NEVER black and white.
If you’re interested in seeing more information on these conditions, we recommend visiting the CDC pages for facts, research, and free downloadable materials:
https://www.cdc.gov/ncbddd/developmentaldisabilities/facts.html
WHAT CAUSES THESE DEVELOPMENTAL DISABILITIES?
There are a lot of different factors that can cause developmental disabilities. Genetics can play a strong role in some conditions such as ADHD and Autism. Cerebral Palsy is not a hereditary condition and usually results from abnormal brain development or damage to the developing brain before a child is born, at birth, or in early infancy.
Each condition, even those thought to be largely hereditary, can develop through contributions from environmental or health-related factors.
Aside from genetics and birth complications, factors like chromosomal abnormalities, substance exposure, preterm birth, low birth weight, specific infectious diseases, and environmental toxins can be contributing factors.
WHY IS DEVELOPMENTAL DISABILITY AWARENESS IMPORTANT?
Advocacy Links has worked in partnership with individuals with developmental disabilities for a decade. Many of our employees have been in the field longer than that. We have sat at their tables and shared their happiness and frustrations, discussed their goals and challenges, and helped them develop strategies for making their lives their own. We’ve developed friendships and listened to their descriptions of the barriers keeping them from accomplishing the things that are often simple for the masses. Simply put, awareness encourages education and understanding. It builds empathy and encourages people to think about how others live their lives and the barriers they may experience. People don’t always see the challenges other people face unless they’re talked about!
Disability Awareness also creates opportunities to spotlight systemic shortfalls and changes that need to be made so that a bold (and accessible) path can be forged toward inclusion and improved quality of life for people with disabilities and their families.
The lack of awareness and education regarding disabilities throughout the global history of civilization has contributed to the brutal and widespread mistreatment of people with disabilities. Valuing the individual and the contributions they make to their families and communities should be prioritized! Without the empathy that comes with awareness and education, we were trapped in a cycle of mistreatment, abuse, neglect, and exploitation. It is important that that cycle not be the defining theme of the lives of people with disabilities once again. Increasing awareness helps ensure that our cultures move forward or, at the very least, allow us to hold ground while we learn how to move forward.
THE HISTORY OF THE TREATMENT OF PEOPLE WITH DEVELOPMENTAL DISABILITIES
The history of the treatment of people with disabilities is not an easy story to tell or read. It is riddled with brutality, callousness, and complete indifference to the idea of “quality of life”. We are doing better, but there is so much more room to grow. Diving into the history of the treatment of individuals with disabilities is painful to anyone who believes in the equality and value of all people. It is particularly painful for all those who love and value anyone with a disability. (It is also full of hurtful terminology. Please understand that some unpleasant terms may be used strictly as a way to show the mindset of early labeling practices.)
In many ancient cultures, the concept of improving the quality of life of people with disabilities was unheard of. They were often publicly scorned, feared, mistreated, and regularly abused. Some societies even encouraged parents to abandon their children with disabilities. Children who did not seem to develop along the timeline of typical milestones, or children who had physical or mobility challenges, were often abandoned in the woods or tossed into a river. There was shame associated with having a child or family member with a disability, and a stigma existed that these conditions were a punishment for the “immoral or sinful” thoughts or behaviors of the individual or their family.
As someone who has worked with people with special needs for well over a decade, as a parent, and as someone who believes all human beings are valuable, I just don’t know how to express the heartache that I’ve always felt about this history. I never want to see or experience a civilization that encourages a mother to abandon her child because that child is different, delayed, or has physical challenges. I want to believe we are better than animals.
CRAWLING TOWARDS IMPROVEMENT
Things did improve but at a glacial pace. Eventually, communities started to have a more altruistic approach to the treatment of people with disabilities and/or those living in poverty. (Disability and poverty were frequently coexisting conditions.)
Public demand lead to the beginning of limited government support and attempts to improve the lives of the poor and people with disabilities. Scientists sought ways to “cure” people with disabilities through proper education and environmental changes, believing that disabilities could be overcome in the right environment. Young children in particular were thought to be able to overcome these disabilities.
The additional attention, care, and environmental improvement that was offered to these children with disabilities (who were now getting one-to-one care, support, and educational instruction) did result in some improvements in their behavior and communication skills. Unfortunately, many children eventually plateaued and scientists began to abandon the theory that the children’s disabilities could be overcome. Although this endeavor did help support the budding belief in the inherent dignity and worth of all human beings, many people started to view people with disabilities as “diseased or broken” after the abandonment of the idea that these children were “curable”.
Asylums and public institutions were created to provide care and treatment for individuals with developmental disabilities and mental illnesses. This left patients segregated from their communities and families and institutions were frequently places of terrible abuse, neglect, exploitation, and had deplorable living conditions.
The 1850s saw an increase in the celebration and worth of the individual and, again, public outcry regarding the conditions within institutions and asylums demanded better living conditions for patients. This resulted in the removal of restraints and more “gentle treatment” rather than the physical abuse, chains, and barbaric “therapies” that were rampant in these settings. Communities finally started to understand that overcrowded, underfunded, understaffed, and segregated facilities tended toward abuse and neglect.
THE PARENT MOVEMENT THAT IMPROVED DISABILITY AWARENESS
In the mid-1900s, the parents of children with disabilities started making their voices heard by aggressively advocating for a better quality of life for their children. Parents, frustrated with the treatment options, living conditions, and limited services offered to their children, started creating ways for their children to have meaningful lives and relationships. They wanted them to be active and valued members of their communities. These advocacy efforts by this group of parents increased awareness and helped lift the stigma that was once associated with having a child or family member with a disability. (What a flex!)
People started having conversations expressing the importance of rights for people with disabilities and addressed inconsistencies in information from medical providers as well as the lack of proper support for children with disabilities within the school systems. These parents built their own support systems to provide meaningful activities, training, and education to children and adults with disabilities. They wanted to see their children have the same opportunities as other children and that they were included in activities. They were dedicated to helping teach others about the value their child had as people and as members of society.
People were finally starting to see that children and adults with disabilities could participate in many activities with some different accommodations or modified programming.
THE RISE OF SELF-ADVOCACY
So, here we are in a time of increased self-advocacy. After the Parent Movement helped increase the visibility of the need for change and advocacy, many communities and families began to understand that people with disabilities were not only capable of advocating for themselves. Not only that, but many were eager to share their experiences and struggles. People with disabilities needed opportunities to provide input into the design and development of the programs and services that would help support them. (Google “Nothing about us without us”.) They wanted options for community living, supports to increase their opportunities for independence, and they demanded person-centered planning in services to address the specific needs of the individual. They wanted to be treated as people first, not just a diagnosis.
State governments, which were given the power and authority to develop and implement programs to help support them, started reaching out to individuals within the disability community requesting their input in the planning, development, and implementation of programs to help support their varied needs.
WHAT NOW?
With the popularization of social media and increased opportunities for individuals to tell their stories, we have come so much further in spreading awareness, but we still need to go further. Individuals with disabilities are often given opportunities to provide input or feedback, but their information is not always valued or prioritized. They are still many cases where people are given limited choices within their services or regulations are incredibly restrictive and services difficult to obtain.
Consideration needs to be given to making accommodations for those who want to provide feedback but may not understand or have access to technology. Input from Self-Advocacy and Parent/Family groups needs to be given weighted priority when programs and regulations are developed for people with disabilities. They deserve a seat at the head of the table for discussions about the programs and services that impact their daily lives.
Awareness spreads knowledge and creates an environment that is more willing to listen to people with disabilities. Our governments, policymakers, and communities need to remain passionately dedicated to their commitment to ensuring people with disabilities get to make their own choices for their own lives, and we all need to continue to work toward being consistently better listeners.
A COUPLE MORE RESOURCES
Are you interested in learning more about self-advocacy efforts in Indiana? Visit the Self Advocates of Indiana website at https://www.saind.org/.
Indiana Governor’s Council for disabilities can help explain what inclusion is and what it looks like: https://www.unite2include.org/
Or you can see the projects they are working on and supporting here: https://www.in.gov/gpcpd/ For more information on the history of Developmental Disabilities in Indiana BEFORE the Medicaid Waiver, visit our Advocacy Links YouTube Channel and watch this great training video: