Too “Normal” for Help? The Unique Situation of High-Functioning PWDs

Hello, readers,

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.

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6 thoughts on “Too “Normal” for Help? The Unique Situation of High-Functioning PWDs

  1. Hey! So, my hell-week is over (or multiple hell-weeks, honestly) and I finally made it to the comment box. Which is good because I have a lot of thoughts about this and, if you don’t mind, I will spill them out incoherently into your blog comments! 😛

    So, most of my thoughts are regarding education, since that’s where I have the most experience. I am also currently taking a series of graduate-level courses in higher-ed pedagogy, and one of the classes I’m taking right now is about creating multicultural and inclusive classrooms. A lot of time we spend discussing ways that the typical western university teaching methods may disadvantage various groups of people and ways to create a more open and welcoming classroom. There’s a lot of really interesting discussion and topics involved, but something I don’t see all that often is discussions of including accommodations for disabilities.

    I’ve brought it up a few times because I’m curious about how the classroom can be improved, but a) it’s a HUGE topic that many people aren’t familiar with the extent of, and b) I think a lot of instructors assume they can just wait for the Disability office at their university to tell them “student A needs extra time on tests” and that will be sufficient. However, I’m not convinced that this one-accommodation-fits-all paradigm is serving people very well. For one thing, extra time on tests seems like the default “solution” to any learning-related disability, and I’m just not convinced that it really makes sense for everyone. For some PWD’s, double-time is more than they need, and for others it’s insufficient.

    Furthermore, these sorts of accommodations only apply to tests, and only if the student has reported their disability. But what about the in-class experience? Is our method of presenting material creating barriers to our students? What about in-class activities that are heavy on discussion… are we prepared to accommodate students with a speech impediment or hearing loss or who have difficulty with that environment? The best answer I’ve been able to come up with so far is to at least try to make my classroom and teaching methods as diverse as possible so that, if a student is not being served as well by one thing, they will still be able to benefit from other aspects. But I’m also aware that I don’t have a lot of first-hand experience with this, so I might be missing some obvious things.

    On that note, I’ve both taught classes and been present in classes with students that have hearing loss. In all cases, I’ve been amazed at how inconsiderate other students have been about this. In one of my current classes, a fellow student spoke up on the first day to say that she has significant hearing loss and she’d appreciate if everyone would speak loudly and face her when possible so that she can hear. Guess what? Pretty much no one does. They go into their shy mumbles and look at the professor whenever they are having any sort of discussion and I watch this student’s eyes glaze over until she just starts messing around on her computer after a while. I have always tried to make sure to speak loudly and clearly and face at least somewhat in her direction so she can see my face. It’s not that hard. I suppose I’m blessed with a loud voice and a rather loud personality, but COME ON. I also feel like it is the professor’s responsibility to speak up for this student and tell other students “please speak louder so everyone can hear” but he doesn’t (hell, sometime I can’t even hear people). I don’t know if he doesn’t want to put her or other students on the spot or what, but I feel like that’s his job. I’ve told other members of my group to speak up, but I feel like it would be obnoxious for me to holler “speak up please!” across the room every. single. time anyone talks since it’s such a discussion-heavy class and I don’t want to make this student uncomfortable. I dunno… maybe I should.

    In one of my math classes that I taught, I had a student with a hearing problem and unusual speech patterns. Two of the other students were absolutely nasty to her, and apparently at some point were in the hallway complaining about how loud she was and mocking her way of speaking while she was right there. It’s a good thing for them that I wasn’t present for that because there probably would have been some cuss-words and insults. Everyone involved in this situation, by the way, were grown-up women, probably their 30’s. Seriously. They were more behaved in my classroom, but I still had to separate them to the other side of the room after a while and give some reprimands. Karma got to them, though. The woman with hearing loss was one of my all-time star students during the entire time she was there and she passed with flying colors. The two mean ones, on the other hand, failed my class and I think dropped out of the college. Ironically, one of them approached me after the 3rd failed test and said “I think I might have a learning disability or something because I just can’t pass these tests… what do you think I should do?” I offered her pre-test tutoring, but inwardly I was thinking “you have only showed up to 1 out of every 4 classes so far, you have not done a single homework assignment, and you are going to claim your failing must be because of a learning disability? I don’t think so.” She agreed to the tutoring, but then didn’t even show up to the last two tests.

    Anyway, I have so far written a novel’s worth of personal anecdotes on your blog, so I apologize, but I haven’t been able to post in a long time so here’s a back-log of comments. One last thing I’d like to say that’s slightly tangential, but it IS related, I promise. It involves another long story (sorry!).

    Life has been pretty rough for me these past couple of months. My family has taken issue with my “lifestyle” for 5 years now and there has been a lot of cruelty from them since then, but I’ve been trying to work out some way to still have a healthy live-and-let-live relationship with them. Well, just a month ago or so, my dad finally wrote to me that they never want to hear from me ever again, and the only reason they’ve bothered staying in touch for the past years was because they thought they might still have a chance of “fixing” me. Now that they’re sure they can’t, they want me out of their lives. Even though I’ve seen this coming for a while, I can’t even describe how hard that was. I was shocked and angry at first, then I went through a few days of having pretty much no feelings about it at all, and then it hit my like a sledgehammer. It felt like both my parents just died.

    However, if they HAD died, my professors would give me a little time off of school to go to a funeral and adjustments would be made for me. Everyone would have a frame of reference to understand what I’m going through and the response would be predictable. But there’s no prescribed accommodation for a student that’s just been disowned. Anyone that I mentioned it to would say “wow, I’m sorry… I hope they come around” (they won’t) but none of them could even begin to guess at how this really felt. Within about of week of the news, my friends and colleagues that knew about it all clearly assumed I should be over it by now. Thus, they started playfully teasing me for “not working enough” and if I would let on even a tiny bit that I felt overwhelmed, they’d immediately talk about how much MORE work they had and how my work was not that bad and if I am feeling overwhelmed now, “just wait until X, Y, Z” or whatever and to stop whining or being so dramatic. So I tried to be careful not to let on how much I was struggling, tried to get through my public presentations and teaching and outreach events with all the same smile and energy that I usually have, and when I’d get home I’d fluctuate between wanting to scream or cry or I’d try to fight down panic attacks while I worked on my homework and tried to prepare myself for the next time I had to stand in public and try to be “alright”. I told my wife that I felt like I was trying to run a marathon after being shot repeatedly; a marathon might normally be challenging, but right now, it felt like it was killing me. My grades plummeted because I just didn’t have time focus or energy to put into them. Of course, all of this was invisible to everyone else. To all appearances, I was just getting lazy, not trying, or just not good enough.

    Well, most of the big things I had to get done are finally over since yesterday, so hopefully I’ll have a chance to emotionally process everything that’s happened with my family. But anyway, this experience really makes me think about how it must be to have a “invisible” or less-visible disability. Fortunately for me, my situation is temporary in the sense that, while my parents will always be gone, I will not always feel the grief and loss that is so debilitating right now. For a person with a mild disability, I imagine it must be like a life-long version of this. When people first find out about it they might try to be helpful and accommodating but, after a time, your every move will be policed because you’re “using your disability as an excuse” or “come on, you can too do that” or “I’m tired of hearing you complain about this” or “what? Haven’t you figured this out yet?” So then you can try to hide your disability, but people will then assume you’re lazy or not trying or not good enough. The way society enforces its expectations on people has no mercy for the diverse circumstances and needs of the individual. After what I’ve been dealing with lately, I can’t even wrap my head around how exhausting it must be to navigate that 24/7.

    So I don’t know… those are just my thoughts. Does any of that ring true to your experiences? Thanks for letting me ramble on, haha! Have a great day.

  2. Wow.

    First of all, I want to express how sorry I am about your family’s reactions and the lack of sympathy and empathy from those around you. Your family’s response to your orientation is completely unacceptable and I hope they come around. If they don’t, I hope you won’t mind my praying for your peace in this situation.

    As to the experiences you wrote about, yes, I can certainly relate to some of that. People who continually project an attitude of, “You’re using your disability as an excuse” and “You should’ve figured this out by now” have no true concept of living with a disability, particularly one that affects the senses. When one of your essential functions such as hearing either is impaired or does not exist, you have to modify a lot of everyday things for yourself. So if you happen to need assistance with other things, why is that such an affront?

    I’ll come back later–until then, have a blessed day.

    1. Thank you for your kind words. I do not mind the prayers. I may not believe in god anymore, but if anything is out there, it can’t hurt to have a few good thoughts sent that way on my behalf. 🙂

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