We’re going to end February with a post I’ve been anticipating, one that talks about high-functioning PWDs and the unique situations in which they find themselves. This post is highly personal because I am a high-functioning PWD. Yet, I hope it will speak to other people as well because mild disabilities and high-functioning individuals are all over America–all over the world. They need and want the same attention their counterparts receive, but it can be difficult to come by. So the purpose of this post is to raise awareness of their situations and hopefully give them encouragement so they can cope more effectively.
What is a High-Functioning PWD?
These days, “high-functioning” is often a term connected exclusively to autism. However, other disabilities are considered high-functioning (HF) as well. For the purpose of this post, I will define HF using a few components. A person with a disability is high-functioning if he or she:
-Has an IQ above 70-75 (defined as mild cognitive disability)
-Consistently exhibits adaptive and social behavior consistent with or above chronological age (i.e., a five-year-old who speaks and interacts at a level expected of a typical five-year-old, either with mouth or assistive technology; a twelve-year-old who can understand and respond to a typical sixth grade school curriculum and can conduct him or herself well in social situations, as expected of a twelve-year-old)
-May have physical challenges but understands limitations, expresses typical desire to improve them, and improves to certain points. Physical challenges do not influence cognitive abilities or development.
-Articulates needs, wants, and feelings on a level expected of chronological age through voice or assistive technology
-Shows interests appropriate to chronological age OR a level of interest beyond chronological age (a hyperlexic person with cerebral palsy, for instance, or a person with high-functioning autism who loves Disney, but also deeply analyzes its characters, plots, and how the conglomerate fits into the business world).
-Understands what is expected of typically developing peers (to grow up and go to college or tech school, to live outside Mom and Dad’s home, to have friends and a spouse or partner) and expresses both the desire and the ability to do these things, to varying degrees. Example: a high-functioning individual with Down Syndrome may not want to go to Yale, but he or she might certainly want to attend a smaller or technical college, and might well be ready to live independently by an age close to that of typically developing peers–say 18-22).
This might seem like a long and convoluted definition, but I am trying to express what it means to be HF without leaving out anything or discounting anyone’s experiences, needs, or wants. To boil it down: HF individuals are cognitively on a level at or above typically developing peers and can be expected to meet many of the same milestones as peers.
One would think that high-functioning people are some of the easiest for traditional disability services to reach and to serve. Because they have fewer needs in some, most, or all “life skill” areas, they should be able to access the services they need to reach their full potential, yes?
Unfortunately, the answer is too often “no.”
This is where this post gets a bit personal. Some of you might remember I’ve told you a little bit about mild CP’s pros and cons, such as:
-Being seen as capable, but essentially being accused of lying when people found out, I actually needed help they didn’t expect or want to provide
-Having few or no academic issues, but not being able to cut a steak or tie shoes
-Explaining my personal goals over and over again, with little or no response from the people in my area whose job it is to serve PWDs.
-Not having my own home – in my very late twenties – and experiencing crippling isolation and self-doubt
While my experience isn’t the same one as all high-functioning PWDs, I would venture to guess many of us have similar ones. But why is that. when we are the ones seen as having the “most potential” of the population of persons with disabilities? (I put that in quotes because some high-functioning persons do not use their potential and because people with other degrees of disability have plenty of potential, too). The reasons are as myriad as the experiences, but there are some common ones. High-functioning persons may not reach their potential because:
-Their gifts are not served at school or work; they’re taught, consciously or not, that their disabilities come first or only
-Their hometowns do not have adequate services
-Disability service organizations as a whole, including special education, vocational rehab, and so on, experience a lot of turnover and burnout, making it more likely for programs to be streamlined or declared defunct (see recent post for more on programs).
-The services that do exist have been geared toward more severe disabilities for so long, service providers don’t know how to help high-functioning people. I’ve heard this a lot. I understand it, but I consider it a frustrating excuse. For example: I would love to move into an apartment with female, high-functioning roommates, kind of like a sorority, if having my own home wouldn’t work out. No such place exists. My alternatives are substandard housing or group homes whose residents’ goals include life skill and behavioral improvement. Nothing wrong with living in a place like that if you need or want it, but if you don’t…ugh.
-The biggie: people mistakenly think that high-functioning individuals do not need help or are making excuses. This is perhaps the most frustrating reason of all, especially when the people using it also imply that high-functioning PWDs are snobs. As in, “If you think you’re too good for a behavior plan and a job at X Menial Company, you don’t deserve help!”
Frankly, the temporarily able-bodied population thinks high-functioning individuals are too normal for help, yet too disabled to be accepted. It’s the biggest catch-22 I’ve ever seen, and I want it defunct. Dead. How will that happen? As with a lot of things, I’m not sure. But I know two things: I’m not the only high-functioning PWD out there who’s frustrated, sad, and just plain mad because of this, and I want to help. Do you? If you do, reach out to your community and the PWDs around you. Explain, through speech, assistive technology, letters, petitions, whatever:
Moderate and severe disabilities need services. We are glad those services are there and glad they are improving. But a different group is being underserved or at worst, completely ignored. Notice them. Listen to them. Help them reach their goals and dreams–because they may be some of your best ambassadors to the world of disability.