When you read the phrase “developmental disability,” what comes to mind? If you’re anything like me, a developmentally disabled person who was a kid in the ‘80s, the phrase itself is a constant reminder–especially as I grew up to do disability community work, in one capacity or other, long-term–that no one ever seems to expect a kid like me to grow up at all.
I think this is not unusual, no matter what one’s disability is. I recall reading some writing by a Deaf friend of mine who discussed in her piece how she had spent part of her childhood wondering when and how she would die, simply because by that point in her own life she had never met a Deaf adult.
As I worked my way through a variety of disability community projects during my early twenties, visiting day programs, regional centers, and schools, all while hearing a lot of talk about “providing this population with appropriate services and supports to improve their quality of life across the life span,” everything always seemed stuck in the decade when I’d begun my formative years. The attitude, like the language that betrayed it, was always stiff, cold, clinical. And I was always treated as the exception rather than the rule: Upon finishing a presentation at a conference, I’d be met with, “Wow, you’re so articulate…and so pretty, too!”
Discussing my disability experience with another person–any person, really, but especially a non-disabled one–would bring on, “Well, but it doesn’t seem to have affected your brain at all.” Worse still was whenever random strangers would approach me and say things like, “My little grandson/granddaughter/niece/nephew has cerebral palsy, too…I hope he/she turns out like you!”
But the worst, most devastating thing of all was trying to bring this up with the guy I was dating at the time, a fellow person with cerebral palsy (CP) who, I would later learn, had staked our entire relationship on this one similarity. I remember telling him something like, “We’ve got to break the stigma against us!” He asked who “us” was.
“People with developmental disabilities,” I said. (I hadn’t yet grown into identity-first language.)
“But, darling,” he told me, in the condescending tone I would come to know so well, “You don’t have a developmental disability.”
“Um…” I was flabbergasted. “Yes, I do! We both do! What do you think cerebral palsy is?”
While I don’t remember the details of the rest of our discussion that day, I do recall him making it clear that, like the majority of people I had met until then, he had developmental disability (DD) and intellectual disability (ID) pretty well mixed up. Reflecting on it all now, I realize how worthwhile it is to unpack this very thing, and explore what it is that makes the phrase “developmental disability” so loaded. Why is it so surprising that people like me can grow up at all, let alone to be good-looking, smart, and even responsible adults?
Below are some answers to important, basic questions about DD, in general and in my own experience.
What are some examples of developmental disabilities?
The most common developmental disabilities include:
- Motor disorders and learning disabilities like dyslexia, Tourette’s syndrome, dyspraxia, dysgraphia, and dyscalculia
- Intellectual disabilities (ID) such as Down Syndrome, Fragile X Syndrome (FXS), and Fetal Alcohol Spectrum Disorders (FASD)
- Cerebral Palsy (CP)
- Attention Deficit Hyperactivity Disorder (ADHD)
CP is the most common motor disability in childhood. Recent studies from around the world report prevalence estimates of CP ranging from 1 to nearly 4 per 1,000 live births or per 1,000 children.
What is “developmental delay”?
A developmental disability that affects all areas of a child’s development is sometimes called “global developmental delay.” For this reason ID (intellectual disability) is included in the category of DD (developmental disability). However, it’s important to note that not all developmental delays cause or are otherwise linked to ID.
Physical, emotional, or neurological impairments, like CP, ADHD, and epilepsy, that manifest before age 22 can cause developmental delays and are considered developmental disabilities.
I am an identical twin, and my CP was diagnosed very early–when my sister and I were eight months old–because our pediatrician and our parents quickly pinpointed the observable, quantifiable differences between her motor development and mine. As a result of this “early intervention” and the treatment it entailed, my CP is considered “mild,” as opposed to “moderate” or “severe.”
I walk independently and my speech is unaffected, although I struggle with things like balance and spatial skills. For this reason most people I meet seem to think my CP has only a mild (as opposed to moderate or severe) impact on the rest of my life. What I tell people who make this assumption is, “You don’t pay the rent for living in this body,” meaning, simply, that my disability experience pervades my being. I don’t know an existence without it, and so I continue to discover new, different, sometimes difficult, but not always bad ways it affects, informs, and challenges me.
What are the characteristics of a Developmental Disability?
DD usually result in substantial functional limitations in three or more areas of life, including self-care, language, learning, mobility, and self-direction. They can adversely impact one’s capacity for independent living and/or economic self-sufficiency.
My CP affects my mobility the most, including the fact that I have never learned to drive. Over time this has meant that a variety of job opportunities are closed to me, which in turn means I have had to make career changes, accept part-time positions, or pursue freelance work rather than devote myself to advancement in one field over time.
Also, my CP is considered mild enough that I have never qualified for disability benefits. While I consider this a major advantage in one sense–not being limited to or by a “means-tested” scenario–in another it has contributed significantly to a lack of access to stable housing, or to a baseline of economic stability in the face of the job/career challenges I have mentioned.
What causes a Developmental Disability?
While the specific causes of most DD are largely unknown, both genetic and environmental factors seem to come into play. Preterm birth is considered a predictor of potential DD, because being born at an early gestational age could contribute to significant organ damage, and because neonatal treatments for premature babies are invasive enough to contribute to such damage rather than mitigating it. Furthermore, the stress of spending prolonged periods in a highly stimulating hospital environment, while being separated from parents and forced into contact with others, could add to the risk of such damage.
My sister and I, like many sets of twins, were born prematurely. We are also not the only set of twins we know of in which one twin has CP, while the other does not. When we were born, we were immediately separated not only from our parents, but also from each other, being transported in separate ambulances to the NICU at a larger hospital, where we would spend even more time away from our mother and each other.
I think often of the impact that experience must have had on my entire family. Among other things, it often seems like the precedent for the social and emotional isolation I have experienced throughout my life, and which society at large seems to impose on disabled people, regardless of their diagnoses.
How do Developmental Disability and Intellectual Disability compare?
While Developmental Disability is generally understood to encompass diagnoses of Intellectual Disability, there are some important distinctions to be made between the two. Intellectual Disability includes a lower-than-average intelligence quotient (IQ) as part of developmental delays manifesting before age 18.
Developmental Disability, on the other hand, includes physical or emotional developmental delays, manifesting before age 22, alongside average or above-average intelligence. Therefore, for example, a person born with Down syndrome is considered intellectually disabled, a person who develops epilepsy during early adulthood would be developmentally disabled.
As I continue to face the many challenges of life with a developmental disability, I want to reinforce how all disabled people’s lives and experiences are just as complex, nuanced, and rich as those of any other person. I want to do more than inform; I want to share how my own awareness has expanded. I am proud to recognize how much I have in common with all other people with Developmental Disability, including people with Intellectual Disability. Early on in my disability community work, I began to identify as a self-advocate, even though the self-advocacy movement originated in the Intellectual Disability community.
I found myself embracing the words and spirit of self-advocate TJ Monroe, profiled in Joseph Shapiro’s book, No Pity: “You have to make thunder.”
The best thing I have ever done is add to the storm!
Read on – What is an Intellectual Disability?
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Kari Turner is a freelance writer and disability advocate from Los Angeles. She and her husband are raising their family in California’s high desert. In her spare time, of which she’s had little since her daughters were born!, she blogs about disability, spirituality, parenting, and faith at http://writingthetao.blogspot.com. Follow her on Facebook and LinkedIn.