Next Steps Part 1: Presenting and Respecting All Support Needs

Hello and happy March, readers!

I’m hoping for at least a little more winter, being located in one of the only areas of the country that’s unseasonably warm at the moment. Still, I understand not everyone feels the same about cold weather. Plus, the cold weather I love can have a dark side, if you don’t have the tools to deal with it, as can hot weather and general hot temperatures.

That’s a fairly new perspective for me, actually. I’ve spent most if not all my life prejudiced against heat (unless it comes from the thermostat), for several reasons. And it’s funny. I’m getting a sense that this is a “season” of new perspectives for me (quotes because yes, there are four seasons. However, a season of life can span more than 3-4 months of a biological season).

In honor of these new perspectives, I’ve decided to write more closely about some of them. This goes along with my last post and expands on it, as well as bringing in some new topics. I don’t know what this series will look like yet. It might just be a duology, it might be a trilogy, and there might be more posts. It depends. For now though, let’s talk about “support needs.”

First, thanks to my social media compatriots on Tumblr for introducing me to this phrase. “High” or “low” support needs seems to be a preferred way for people with disabilities to talk about how disability affects them. It takes the place of “high- or low-functioning,” and I understand why. Talking about someone’s “support needs” does not inherently judge the person’s ability to live life, meet a certain (abled, majority) standard, or act in certain ways. It takes the onus off the person, presents them as a person, not a problem.

“Support needs” could very easily become the new “special needs,” and I will address that. In the context I’ve seen it this year though, this phrase speaks directly to the fact, “This person needs support,” which in actuality, yeah–everybody needs. The “high” or “low” can indicate, “This is the level of support this person needs in a given situation.” That is, I have very low support needs in terms of intrapersonal awareness, intellectual pursuits, etiquette, and so on. My support needs become much higher in terms of physical movement. They might be “lower” compared to a person with CP who has paraplegia or quadriplegia, but those needs do exist, are much more egregious in physical environments, and are easier to spot.

From what I’ve seen, the phrase “support needs” is empowering people with disabilities to take more charge of their lives and agency. Instead of being pigeonholed as “special,” they’re now able to express, “No, I’m not ‘special.’ I’m not ‘other.’ My needs are not ‘extra.’ I am asking for support, the same as everybody else does, and I can specify where and what that support should be–or others can help me do so.” And because of that agency, I’m seeing more abled people question how they have viewed people with disabilities, especially certain kinds. I’m seeing people with different disabilities rethink old views–I’m one of those people. And I’m seeing the possibility for the world to open up to disabled people, even and especially for those with “high support needs.”

At the same time, I’ve found myself asking questions (come on, it’s me). 🙂 Questions like, okay, what does it look like to accept and include high support needs on a practical level? How can people with higher support needs be represented better? And perhaps most importantly, what can we, what can I personally, do to keep “high/low support needs” from becoming the next “special needs” or judgment of “functioning?”

So, one at a time…

Including Higher Support Needs: A New Paradigm Shift

First off, I’ve got to admit, I had another paradigm shift on this one. I enjoyed it, because a paradigm shift means learning. Yet, it was pretty, yeah, seismic, if you’ll allow me.

I need to apologize, especially to certain readers. Over the years, I’ve made assumptions about people like you without knowing everything I could or should have. I’ve campaigned hard for every PWD’s dignity and right to live the life they choose, but I’ve still been ignorant in some of my statements, attitudes, and solutions. So the first thing I’m gonna say is, I apologize.

The next thing I’m gonna say is that understanding, respecting, and including disabled people with higher support needs takes a lot of learning and a paradigm that shifts in a big way first, but keeps shifting in smaller degrees the more you learn. For me, the shift started when I read some posts and stories and decided to apologize for/throw out some things I’ve said or implied. Things like:

-Assistive technology can fix communication issues (because you’d think I’d understand, not everyone can use assistive technology)

-A “severe” manifestation of disability automatically qualifies you for group home placement/intensive services you may not want. This was an effort to answer the critics who would come back at me with, “You don’t understand, my loved one needs 24-7 care, my loved one is violent, my loved one can’t do for themselves, you’re just mean and ignorant.” But I also should’ve answered the critics that could and probably did say, “Hold up, why does she clarify that for our group, intensive services or placements, which still mean lack of agency, are okay?”

-I know what a “severe” manifestation is (because okay, going by dictionary definitions, maybe I do. But really. I’m fine today, but if my full-blown vestibular-ocular symptoms came back tomorrow, you could argue I was severely disabled, right? Right!

-Therapy/treatment is a last resort (more implication). I stand by the things I’ve said about therapy going wrong if you let it, i.e., taking over your life. But until I needed it again…you get it.

-This is the biggie. I’ve implied, a lot, that some needs are less acceptable than others, because of my own schema, my own experience, my own fear. Some examples: the use of diapers, the need for feeding, “childish” interests or comfort objects, certain kinds of stimming. Now, I have also said, that high school student using a comfort object or a diaper could also ace physics. I’ve screamed that the adult who stims is still an adult and should be treated like one. But what I didn’t do, was clarify that the need can still exist. It doesn’t deserve to be erased or “taught” or “therapied” away. And if that high-schooler who uses a comfort object or a diaper or whatever, can’t ace physics? Well, so freakin’ what? “Secretly smart” is a trope that needs to die (more about that later).

This doesn’t mean I’m gonna start using the “mental age” theory. I stand by the statement, “mental age” is a bunch of crap. If your chronological age is 37, you should be treated like you’re 37. What I’m saying is, a 37-year-old can and should still have agency. So if my autistic cousin who’s a year older still watches Shrek on the daily or weekly and thinks it’s a masterpiece? Fine! If the only other classmate with CP I ever had, passed away in his 20s after spending his working years as a Wal-Mart greeter? Fine! It was never my place to say he should individually want more, even if I stand by the statement that people with CP (and anything else) should have more opportunities for more, if they want them. That classmate’s life was full, productive, and worthy, as long as he thought so. And since I can’t read minds… (even if my parents accuse me of trying to do it; neurodivergent hazard)…

So, authentic inclusion for people with higher support needs requires a few key things:

(1. Change the way you look at “higher” needs. A person like me, who can write 300-page novels but can’t read an algebraic graph, may actually have “higher” needs than a grown adult wearing a diaper, if that diaper is easily dealt with but I’m required to interact with that graph, and nobody’s around to provide accommodations. I have “higher” needs than a person with CP who is not also autistic, because that person is probably more socially at ease than me. He/she probably doesn’t struggle with sensory overload, noxious stimuli, etc. I’m betting that person absolutely doesn’t deal with what I’ll call “autistic glitches,” when something I thought I could handle surprises me. (Example: Autistic people are characterized as not understanding sarcasm. I usually do understand it, because I have such a deep interest in literature and verbal stuff. If I’m watching The Golden Girls and Dorothy says, “No Blanche, [Rose] is upset because they keep changing the taste of Coke,” I can read Dorothy’s tone. But some people can mean sarcasm while sounding 100% friendly. So occasionally, I’ll glitch and ask, “Are you being sarcastic or…”)

(2. Recognize and throw out any assumptions you’ve made, such as that someone who can’t speak, walk, or take themselves to the bathroom “must be secretly smart/is smart in their own way.” Because what if they’re not? Are they any less worthy of a good life and agency? No way! (I recently found out, intellectually disabled people tend to hate “smart in their own way.” Can’t say I blame them). Other assumptions: hygiene-based needs are gross, the enjoyment of certain media means a person has a certain “mental age” (maybe they just like to analyze, like with me and Disney), AAC, ramps, other mods will fix the barrier for good and in all situations.

(3. Make space for “high” needs, in whatever form. This one’s actually not new, but it bears reviewing. A classic example would be, never exclude a student with CP, spinal muscular atrophy, whatever, from a field trip, mission trip, and so on because of their mobility aids or because they might need feeding and grooming help. But along with that, don’t call attention to those needs by making them “bigger” than they actually are. A teen who needs help bathing is still a teen. Her IQ doesn’t drop 10 points in the shower, and her understanding of modesty remains. (I got help with hair-washing past an “appropriate” age on trips; a female chaperone helped, and I wore a bathing suit). Never make this person feel like, because this need takes more time, because this need is “age-inappropriate” (better would be “atypical”), I overestimated you.

Representing People With Higher Support Needs

I’d like to say we’re working toward making higher support needs more welcome in all spaces. That’s true sometimes, as in the hair-washing example from my life. That’s true for some disabilities or disabling conditions, like when a girl with cancer from my church’s youth group still got to go on the beach trip because one chaperone was an RN and because the effort was made to plan ahead and meet her needs.

But…

But an autistic girl who entered youth group a couple years later? I’m not sure she ever went on youth trips or was even invited or considered unless a parent of hers came, too. She didn’t speak much and carried around an American Girl doll like a real child, into her teens.

A cognitively affected boy of similar age never went on youth trips that I know of. I was a Sunday school assistant/teacher for about 3 years. Most Sundays, I saw that boy sitting in children’s church.

And that girl with cancer? We all denied it, we hoped for healing, we prayed for it. But we all knew, that trip to the beach might be the last one. And so now I wonder, do we as a society make accommodations for those situations easily and willingly, but when it comes to a disabled person who’s “healthy,” who has an expected life span, do we back off, even subconsciously?

Now, you might say, “That’s too bad, Chick, and yeah, we gotta do better. But how will representation, because you yourself admit that’s often fictional, help?”

Fair question, because I asked myself. And fiction being fiction, sometimes it doesn’t help like I wish it would or could. (Fiction’s my passion, after all, I’d like it to actually, ya know, help me keep the lights and water on and eat)! Still, representation itself often starts with representations of real life and real people. And people with these higher support needs, esp. autistic people, people with intellectual disability, and the like, are hardly ever represented, except as stereotypes.

That’s why I’m so thrilled that on social media, people with intellectual disabilities, autism, and other underrepresented disabilities are beginning to speak out. Disability advocates and adjacent individuals are joining them. There are now concrete suggestions on how to create and write intellectually disabled characters. And the more, the better, well-rounded, three-dimensional representation we see, the better I believe real life can get.

What if “Support Needs” Becomes the New “Special Needs?”


Again, it’s unfortunate, but yes, I can see how this could happen. After all, “special needs” used to be a nice phrase, right? (Well, I’m not sure it ever was, but if you think back to the ’70s. ’80s, and ’90s, I mean. The intent was to get away from the meanness, the sugar-coating, etc.) And for now, I think that speaking of disability in terms of support needs is okay. Again:

(1. This takes the onus off the person to change, to be “fixed,” to make their own needs fit into some kind of box to placate the abled

(2. This implies that everyone needs support; the question is not the need or what meeting that need will entail or “take” from other people. The question is, in a culture where support is okay, where everybody needs it, where do you need it and how do we provide it so that next time, you can support one of us?

(3. As I have explained “support needs” comes across as more fluid, more in line with what’s already happening. A phrase like “special needs,” in contrast, implies a fixed set of needs that must be met, wherein the person with them is pulled out of everyday happenings because that’s the only way they can be served. As we know, that’s incorrect.

But:

(1. “Support needs” still does imply that the person with them, usually a person with a disability, has different needs than the majority, which might then be judged and might damage the estimation of their competency

(2. “Support” might, sometimes does, imply the person needs to be “propped up,” can’t achieve independence or interdependence

(3. “Support needs” is still focused on needs, weaknesses, what the person can’t do or needs help to do, whereas a neurotypical or abled person is still best known for their strengths and competencies even if they say, “I need help/support.” Come on, folks. Even the most hardcore addict, the angriest inmate, the most rebellious runaway, usually has people in their lives who can say, “Before this/despite this, my loved one is/was compassionate, thoughtful, astute, athletic, determined, great at X.” Disabled people, no matter how mildly or severely affected? Too often, still no such luck.

But you know something?

The more I think about it, the more I realize: we’re in a different place now than we were in 1975, 1986, 1992, 2013, even 2020. “Support needs” doesn’t have to become the new “special needs.” Now, I’d be okay if it went out of vogue or disappeared. My personal dream/goal is that someday, we can just say, “disabled people” and mean it the way we mean “Black people,” “Brown people,” “LGBTQ people,” “Muslim people.” With a sense of pride, a sense of, “This is identity and culture and story and life, and it’s a good one to have.”

The thing is…”support needs” only becomes ableist, only becomes negative, if the ableist viewpoint is allowed to win. It won with “special needs” because back then, nobody could see, or wanted to see, that disability was equal, not special. This happened because in a quest to make all children feel special, we actually mis-labeled a whole group and stigmatized them, as in, “Special is great, but for you, it means weaknesses, not strength.” The ableist viewpoint won with “special needs” because we were comfortable with what we’d always done and always believed–namely, that disability truly was different, truly needed to be separated out, truly did take extra, painful effort.

“Support needs” can be different. It can be a phrase PWDs use as part of their culture, as part of proud identities they take for themselves and use with agency.

Plus, and more importantly, as I have always said, disability can be different. How we interact with it can be different. So let’s keep taking our next steps.

Next Time: Getting Smart About “Secretly Smart,” or Why This Trope Needs to Go Away

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