March is Developmental Disabilities Awareness Month
Introduction
Definition
The term “developmental disability” is commonly associated with someone who has a cognitive or intellectual limitation. However, developmental disabilities are much more comprehensive than that according to the Center for Disease Control (CDC). Instead, the term “developmental disability” is actually an umbrella term for a group of conditions. These conditions usually arise before, during or just after birth. They impact normal functioning and usually affect an individual throughout their entire lifetime.
Types of Developmental Disabilities
There are many conditions which are considered developmental disabilities, including ADHD, autism spectrum disorder, Cerebral Palsy, hearing or vision loss, intellectual or learning deficits, behavior issues, or other developmental delays. Developmental disability is not solely limited to intellectual limitations, but includes a wide variety of disorders that may profoundly impact an individual’s ability to lead a normal, independent life. In California in March, 2004, the law defines “substantial disability” as a condition or set of conditions which causes functional limitations in three or more major life activities as defined by federal law.
Rates of Developmental Disabilities Within the Population
Because the category of “developmental disability” is so broad, it is difficult to know how many people in the United States fall under this category. For example, the prevalence of Cerebral Palsy is about 1 in 334 live births, or just about 1 million people in the U.S., although the abilities of people with Cerebral Palsy can vary widely. It is also difficult to measure because it is common for an individual to have multiple developmental disabilities.
Causes of Developmental Disabilities
There is no one cause of developmental disabilities, although circumstances before, during or just after birth usually play a major role in being born with one. Many developmental disabilities are caused by genetic or chromosomal anomalies, such as Down Syndrome and Fetal X Syndrome. Some hereditary factors are suspect for autism spectrum disorder as well, although this has not yet been proven. Prenatal exposure to a virus, such as cytomegalovirus or rubella, can play a role. (Note: although COVID can cause premature birth, there are no signs in the scientific literature so far that suggest that COVID-19 can cause developmental disabilities, although further research is currently being conducted.) Major factors causing developmental disabilities usually involve low birth weight, premature birth, multiple births, oxygen deprivation at birth, alcohol or drug abuse by the mother, and infections during pregnancy can cause an increased risk for a developmental disability. Untreated newborn jaundice can potentially cause cerebral palsy, vision and hearing problems and other conditions. Because the causes can be so broad, it is difficult to foresee a future in which developmental disabilities no longer occur. Good prenatal planning is the best chance of avoiding a developmental disability, but there is no present way to completely prevent a developmental disability from happening.
What Do People With Developmental Disabilities Need?
People with developmental disabilities need two things. The first is to be treated like everyone else. I once heard a comedian with Cerebral Palsy joke, “I don’t suffer from Cerebral Palsy. I suffer from PEOPLE.” It got a huge laugh from the audience, but she hits on an important point. A very common reaction to someone with a developmental disability is often, “what’s wrong with them?” The questions “Why does he act that way?” or “Why does she walk that way?” can be endearing coming from an inquisitive child, but from an older individual (particularly an adult) this can be harmful or even threatening. People with developmental disabilities want to be treated with respect and compassion, just like everyone else. There is nothing wrong—this is simply the circumstances of one’s birth, which can happen to anyone.
The second thing needed is to be able to function at the maximum level of independence. This was recently written into California law with the Lanterman Act. Many individuals with developmental disabilities simply want to live their lives as independently as possible, and be able to live the same type of life that others do. The ability to which each individual can be independent can vary quite widely. Many need caregivers for basic life functions, while others are highly independent and can carry on tasks as well as the able-bodied population, having adapted their disability to engage with the environment.
The Future of Developmental Disabilities
Developmental disabilities are a permanent reality in our society. Although medical advances both for intervention and to improve the lives of the developmentally disabled continue to be developed, this set of disabilities will continue to persist. More premature infants are being saved, resulting in more babies being born with developmental disabilities. For example, the rate of infants being born with Cerebral Palsy has been unchanged in over 50 years, despite substantially better neonatal intervention, such as vaccines for rubella and other viral infections in utero.
Legislation has been passed recently that has benefited people with developmental disabilities to make society more inclusive, such as the Lanterman Act, the Americans with Disabilities Act, and other landmark pieces of legislation. Medical procedures and technological advances are being developed to improve the lives of the developmentally disabled to live more independent lives to the best of their ability. It is important to note that these advances are likely to only go so far. The real barrier that can be addressed is inclusion in society in general. We can’t say, for example, that someone can’t use a building because of their wheelchair, but rather that the building is not wheelchair accessible. It represents a fundamental shift in thinking to realize that society is responsible to provide inclusive services, and to be more inclusive so that everyone can participate and lead full and productive lives.
SJPL Accessibility Services
Also, check out disability-related library services through the San Jose Public Library (SJPL), with accessibility and our disability inclusion events. Here is also another blog highlighting some of our developmentally disabled volunteers.
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