Category: Presume Competence

Never Say Never

4/30/2015

Copying proof of diagnosis for Caley to receive services, I ran into Caley's psychiatric evaluation from 2011. The entire thing is very dourly written, and it concludes with the following:

"She has serious social and learning difficulties. Within reasonable medical probability, she will have difficulty performing college work adequately unless she has special accommodations.

Based on my interviews with her and her mother, she will, in the foreseeable future, not be able to live independently due to her significant problems with peer relationships, impairment in the use of non-verbal behaviors to regulate social interaction, her extreme intolerance to change, and her rather stereotyped interests and behaviors."

I would like to point out that less than a year later, Caley was living independently. And shortly after that she was performing her college work sans accommodations. I don't say this to decrease your trust in autism professionals - after all, I hope to become one. I'm also not trying to put down accommodations or assisted living - recently Caley moved back in with me for a little bit while she gets off her feet post-graduation, and she definitely has benefited from accommodations in the past.

What I am saying is that evaluations like this HURT. Reading this hurt my mother and my sister, and devalued her belief in her own competence. What's more, attempts to predict the limits of a person's abilities are generally pretty doomed to failure. There is no way to truly know what someone will and won't be able to accomplish. So we should never, EVER say never.

-Creigh

Note: On our Facebook page, where this was originally posted, a reader pointed out how very applicable one of Shel Silverstein's poems for children was to this, so I'd like to share it here:

0 Comments

Caley

11/9/2014

0 Comments

When many people look at Caley, often what they see is what she can’t do. They see autism and labels and difference and her many areas of struggle and automatically classify her as incompetent and lesser, seeing only perceived areas of deficit instead of her as a whole. 'They' are also very, very wrong. So today I want to share with you the person who I see when I look at Caley.

The first thing that pops out when you meet Caley is love. Absolute and unconditional love. She loves deeply, and she shows that love with the bear hugs she is renowned for. Caley has cycled through many types of hugs throughout her life – most memorably, the tackle hugs of her childhood – but these, her bear hugs, have been the most consistent. When people see her approaching with one, they immediately shout “Go easy on me!” But the hugs, though tight, are never painful. They’re her way of showing her love for others, and that’s the best gesture of them all. Even virtually she shows her love – as with all those she knows, I often check my phone and look down to find a text that says simply “random hugs!”

The other feature of Caley’s that I associate most strongly with her is her passion for helping others. This is the girl who goes out and feeds the homeless most every week that she can manage it. They sense her love for them, as for everyone, and the fact that she, too, is often underestimated by society, and this enables her to get closer than most. She tells me about the friends she makes there – the man who she’s started an informal book club with, the woman who just can’t find a job, the little one she plays with who, though a toddler, is already a ladies’ man and will “fall” into the lap of all the girls. Her passion for helping doesn’t just express itself in volunteering. Caley is the girl who frets about her friends who are sick, is always available with a phone call to any friends she knows are struggling, calls me to ask how best she can help a friend going through a hard time.

Behind that passion for others and love for the world lies a fierce belief in justice. Whenever I hear someone expressing racist/sexist/ableist/homophobic/etc thoughts I immediately tell her she can leave the room. This is a gesture of benefit to both the person expressing those thoughts and, more importantly, to Caley. From experience, I know she’s unlikely to change their minds, and likely to emerge deeply hurt by their words. Moreover, no matter her relationship with the person, I know she’ll plow straight through it in an effort to get at those offending words. Caley sees wrongness in the world and is immediately drawn to fix it, no matter the obstacles in her way. The rest of us see the world in shades of grey – Caley sees grey, too, but when it comes to injustice she sees things as black and white. And personally, I think she’s got it more right than we do. There are very few things in the world that Caley truly hates – injustice is one of them.

And to those people who say that love and helping others and beliefs in justice won’t get you a job – well, I say to you that she’s a person, not a walking resume. I also say to you: presume competence. Because Caley has achieved a whole heck of a lot more than anyone ever thought possible, and the biggest barriers in her way haven’t been her disabilities, but the low expectations of others. Caley is graduating college this year, with a major in Public Health and a minor in Homeland Security and Natural Disasters. She fought tooth and nail for this degree, pushed through dysgraphia to write essays, lived away from home for the first time despite the lack of a safety net, fought anxiety to go to class, battled to make her ‘spoons’ get her through class, and disproved the disdaining views of others yet again. Caley is the toughest, strongest person I know, not by virtue of disability – this is not intended to be ‘inspiration porn’ – but by virtue of how she has battled the low expectations of others and a society often hostile to neurodiverse people at every turn.

Though it breaks my heart to say this, she’s fought against these expectations since pre-K, and I know that as she moves out into the world on her own, she will have to continue to fight. But she has battled through this far and I know she can continue to do so. That, to me, speaks more about her than any resume ever could. Caley’s going to try to go into AmeriCorps after she graduates this year, an opportunity that combines all of her passions into one, and though it won’t be easy, I know she’s up for the challenge.

None of this is to say that Caley does not struggle or that she’s perfect. She’s human, and she does have a disability which is a huge barrier for her to overcome in our society. And, yes, Caley does require help and support. But she is far, FAR more than her weaknesses. She is passionate. She is strong. She is competent. And THAT is what you should see when you look at her.

[Image is a picture of Caley at about age two in a toy car holding the keys she used to carry with her everywhere. Driving is another one of those things that people have said she'll never be able to do. Caley's determined to learn, though, and I know this is yet another area in which she will blow society's low expectations away.]

-Creigh

0 Comments

Self-Advocacy is Only Half of It – On the Importance of Listening

7/17/2014

2 Comments

So I may have had a minor freak out on my sister in the parking lot of a restaurant the day before my dentist appointment when she reminded me about it. I told her that I had tried to say I didn’t want to go to the dentist, that I hated them, and that I really didn’t want to go because it HURT. Plus, truthfully, I was a little bit scared. She told me that I could advocate for myself at the appointment and that if I didn’t want to, I didn’t have to go. So I went.

Now, my fear and hatred of dentist appointments and all things to do with teeth have several roots (no pun intended). For one thing, I once had baby teeth that needed to be pulled, and I remember the dentist putting his knee on my chest to pull it out. It hurt a lot and I kept on spitting blood, but no one seemed to think there was anything wrong with that. Seriously, he should have figured out that by the time he had to put a knee on my chest that maybe we should reschedule an appointment and come back later when the root had dissolved more.

My other issue came from my orthodontist. For one, they never really thought that my cheeks being torn up by the orthodontia to the point that flesh in my cheeks was hanging and bleeding. I had had my tongue drilled through once as well (by accident while they changing out some of the orthodontia). Seriously, I was eight or twelve at the time, they should have expected my tongue to move.

But the biggest problem at the orthodontist was when they ignored my fledgling attempt at self-advocacy. They had just increased the length of my orthodontia and it was causing my jaw to hurt horrifically. I told them to stop, but they ignored me.

Around five minutes after they completed the procedure, I purposefully bent the orthodontia with my mouth, hoping that would force them to fix the problem. Of course, everybody got VERY angry at me. And I had to make up a story about being bullied at school because of my orthodontia so they would finally stop getting mad at me. They then left it as it was beforehand without the increase in length.

While I was bullied for other things, I definitely wasn’t bullied for my dentistry. Truthfully, they were the real bullies by taking away by bodily autonomy and ignoring my claims of pain. [Creigh’s addition: And, really, in what world is bullying to be taken seriously, but someone telling you they're in serious pain is not?!]

So, yet again, four days ago I had to attempt advocacy about my mouth…with my mouth (joke intended). I told the dental assistant about how I had a sensory disorder and that brushing my teeth and especially flossing really hurt, and that she wasn’t to floss me. She kept arguing that it wasn’t sensory, it must actually be me grinding my teeth, like she knew my body more than I did. But finally she conceded and said she wouldn’t floss me, and was kind enough to give me numbing gel while she did her work.

Unfortunately, she then decided that it was okay to floss me. I don’t know why I didn’t speak up about that. Sometimes self-advocacy just feels like wasted energy. Because after you advocate for the first time and they won’t listen, you know they won’t follow your wishes at all. I’d hoped that would have ended when I became an adult, but it didn’t.

I went off, disappointed. Yes, my teeth were clean, but my wishes weren’t respected. And the numbing gel hadn’t changed the fact that I could feel every scrape against my teeth, taste the blood in my mouth, and hear the high pitched whirring of the tools.

At the end, I dared to ask her, hey, look, do you know of a toothpaste that doesn’t hurt? And she decided I was allergic to an ingredient in toothpaste. At that point, I felt too cowed to be able to correct her. So I didn’t get the information that I needed.

Afterwards, I shared the information with my sister, and Creigh shared with me that the receptionist had asked her if she would sign my HIPAA waiver for me, or if I was competent enough to do so myself. I’m freaking twenty years old. I’m an adult. Yes, I’m competent.

Unfortunately, this sort of issue has followed me around in all sorts of areas. Including medical, where not advocating for yourself can be an incredibly big issue. Multiple of my doctors have not listened when I told them I did not feel comfortable taking certain medications. And I felt cowed into accepting the prescription. Even though I tried to argue, they wouldn’t even listen. They just bulldozed over me.

So, like the girl in the orthodontist’s office so many years ago, I had to take matters into my own hands. I simply didn’t take them. Or I’d try taking the medications and then stop taking them by myself. Which led to dangerous withdrawal effects more than once. Because I didn’t feel like I could tell them I wanted to stop and have them listen to me.

All of this could have been avoided if I was listened to. Self-advocacy is only half the story. You have to have someone to listen to your words. Otherwise you just stop advocating. Because what’s the point?

So do us Autistics a favor and please listen to us when we try to advocate for ourselves? Because it’s really hard and because we’re going to have to be doing it for the rest of our lives.

-Caley

[Note: Post dictated by Caley and typed by Creigh, but these are all Caley's words. Image is of an array of dental tools on a tray.]

2 Comments

Presuming Competence: What Autism Professionals Need to Know

5/26/2014

0 Comments

Just because we’re Autistic and we’re not supposed to be able to read things, that doesn’t mean we can’t tell that you’re presuming our incompetence. I had to go to a lot of so-called “professionals” when I was younger. They would spend our lessons teaching us using “happy faces” and “sad faces” and asking us which was appropriate for the time. It was incredibly boring, and I knew which was which very easily, but they never moved on. I was in elementary school the first time I ran into that exercise, and they were still using the same thing on me when I was in high school.

I also was constantly assumed to be a parent of an autistic person, as opposed to an autistic adult, when I interacted with autism organizations. I remember I got in contact with an autism organization, which I'm choosing not to identify. I had been forced to get into contact with them when I talked to professionals asking them for help dealing with an issue and they assumed the fact I was autistic was at the root of my problems, even though I kept telling them again and again that wasn’t what I was having a problem with. When the representative called me back, they were asking me about “my child” the entire time. “Are you the parent of Caley?” they asked me. I just hung up, because I didn’t know how in the world I could respond to that. Apparently it was assumed that an autistic person would not be competent enough to make the phone call.

A year later, I had another run in with the same organization, having endeavored to give them another chance. When I asked for help, they assumed I was asking about volunteering opportunities, not asking for help for myself. It was assumed that a university student could not be autistic. When I saw the puzzle piece logo, which was on all of their material, I told them that I found the puzzle piece logo to be offensive. I said, “I’m a person, not a puzzle.” The representative told me, “I know, but our director insists upon it.” Once again, I had to cut off contact, and didn’t get the help I needed.

When I was getting help from a governmental organization for disabled people, they told me I had to take an IQ test because they were going to be giving me help going to college and wanted to see my job aptitude. Prior to this point, repeatedly the jobs they were suggesting for me were very basic skilled, the sorts you learn at vocational schools as opposed to college. When I asked how high the scale could go on the test they were giving me, they realized they didn’t have an IQ test that went into above average. I had to come back another day for a test that could measure me properly. Apparently disabled people aren’t expected to be intelligent.

At the autism support group I accompanied my family to, parents basically got together, talked about how horrible it was to have autistic children in my hearing and all the hearing of all the other autistic children and adults there. It led me to feel like I was a burden; I was told I was a lot of extra work and I wasn’t worth the work because I wasn’t a normal child. Not explicitly, but it’s basically what they were saying a lot. I left there hurt, having heard that I needed a cure, which made me feel like there was something wrong with me being who I am. The autism support group apparently wasn’t intended to support autistic people.

At the social skills group, we were all shoved into the same room regardless of age or skill level. We were made to repeat stupid scripts again and again. It was annoying. Because I’m not stupid, but they were treating me like I was stupid.

All of these experiences were very othering, too. Out of these experiences, the support group stands out as the worst offender, one which I was exposed to again and again and again. "Normal" kids' parents don't have support groups. The social skills group was the same; "normal" kids aren't expected to rehearse the same conversation over and over again. Normal kids aren't treated as though they're stupid. But these experiences are far too common for autistic children.

That’s it. Remember that we’re here and please presume competence, because if you don’t, I’ll presume you’re not a competent professional.

-Caley

Note: This post was dictated to me, Creigh, and I typed it all, since as previously mentioned Caley has trouble getting her thoughts out when writing. We also worked together on editing for grammar and flow, but the words are all Caley's.

0 Comments

No deadlines on progress

5/14/2014

0 Comments

Originally published April 23rd

Too often we assign deadlines to developmental milestones, and when an autistic child fails to meet one, we fret and worry about their future. My own family was certainly not immune to this. I can tell you that Caley didn't start reading "on time", and I remember my mom and dad talking about it in hushed, worried voices.

At the time I was only an elementary schooler myself and I reassured them confidently, "Don't worry! Caley's just like me - I didn't read well at first, either, but the summer of third grade I bloomed." Lo and behold, at about that same timeline, Caley started reading. (The impetus, if you're interested in knowing, was discovering her first Harry Potter book - Caley says it's the first time she learned that reading could actually be interesting!) When she started I remember gleefully telling them, "See! I told you so!"

Why did I correctly predict that while my parents didn't? You could chalk it up to luck, but I think there was more to it than that, because that is one example of a long string of similar incidents. I think the key lies in the fact that I was blessedly ignorant of all these "deadlines" and negative narratives about autism because without them to cloud my vision, I could often see Caley's actual capabilities better than others.

Artificial deadlines are just that, artificial. Kids on the spectrum, and for that matter, all kids, are all on their own schedules, and just because they don't start doing something "on time" doesn't mean they never will. As Jess over at Diary of a Mom said today, "There are no deadlines on progress." And that's just so, so true.

-Creigh

The article that inspired this: http://adiaryofamom.wordpress.com/2013/06/05/rethinking-functional-behavior-and-the-tyrrany-of-made-up-deadlines/

0 Comments

Believe

4/1/2014

0 Comments

Originally published 3/13/14

When I moved into my new dormitory a while back, there was a guy there I hadn't met before. We started talking about autism and I told him about all my advocacy and mentioned my sister was on the spectrum. Then he told me that he'd peer mentored a girl with autism during orientation. He went on and on about what a really cool girl she was and how she was so awesome. Suddenly I froze. "What's her name?" I asked. "Caley," he replied. And out of nowhere and much to his surprise, I hugged him, a complete stranger, on impulse. As I was hugging him, I whispered, "That's my sister."

What made this moment so beautiful wasn't that he thought Caley was cool, although that was also great. It was that it came during a deluge of negative talk, a time where well meaninged people, professionals and laypeople alike, kept insisting that Caley would never go to college, that she'd never succeed. Not for any reason other than the fact that she's autistic. And here he was, telling me that he'd met her at college and thought she was awesome and doing really well there. I cannot express to you my emotions in that moment - but I think you can imagine.

What I'm saying in this post, is just believe. Believe in the competence of anyone you know on the spectrum, even when others don't. Because they're far more competent than society would have you think. -Creigh

0 Comments

I Cannot Call My Sister Cute: Autism and Infantilization

2/28/2014

5 Comments

I cannot call my sister cute. That’s not because she never does anything cute. In fact, when she wears her frog beanie or hugs her plush dinosaur – things that would make even Voldemort look adorable – sometimes I slip up and I tell her, Caley you look so cute!

And she flinches, as though I’d just mortally insulted her. And in Caley’s world, the world of people with autism, I have. Because words are weapons, and even the sweetest sounding ones can cut, can be used to demean and diminish those they target. Cute is one of the words that you’d never think of as offensive, but Caley would rather I used any other four letter word around her…any one but that one.

Let me show you what I mean. Before Caley came to college, I let her stay in my dorm room for a while to dip her toes into the college experience. While she was staying with me, an acquaintance came by and spotted Caley. People can generally tell that something's ‘different’ about Caley, and often guess it has something to do with a disability, although they can't quite put their finger on what that disability is. This acquaintance was apparently one of these people and when she determined Caley was ‘different’ she adapted her own demeanor towards Caley accordingly.

When she finally left the room, I was left with a very odd sensation. Something felt very wrong and weird about the interaction I'd just seen, but I couldn't quite label what it was. After a lifetime of defending Caley from peers who meant her harm, verbally or otherwise, I’d gotten pretty good at determining subtle undertones of anger, taunting, and verbal barbs. But try as I might, I couldn’t find a single instance of any of those in her visit. In fact, my acquaintance had been very nice – even saccharinely so – to Caley. Why, then, was I left with a bad taste in my mouth? Finally, I figured it out.

My acquaintance had treated Caley like she was a small child. As soon as she’d gathered enough data to dump Caley into her mental ‘disabled’ category, my acquaintance had immediately switched to baby speech. She’d spoken very slowly, exaggerating every word, dumbed down her vocabulary, and reacted with over-acted enthusiasm to every phrase that came out of Caley's mouth. At one point, she literally patted Caley on the head. And, what's more, every few sentences or so, my acquaintance would look up at me with a bright smile and utter that damning phrase, "Your sister's so cute!"

Despite knowing that Caley was going to be coming to the Honors college next year, and therefore quite smart, upon sensing that vague feeling of disability she'd immediately down-graded her view of Caley's intelligence and maturity all the way down to that of a 5 year old. And in this instance, as in many, this ableist-fueled demotion was encapsulated by one word: “cute.”

This is but one example of a deluge of such well-intended but nonetheless offensive occurrences that Caley has dealt with her entire life. Classmates, teachers, relatives, random passers-by in the grocery store, one of the first things they exclaim when they meet her is “You’re so cute!” (or worse, they’ll judge her as not competent enough to interact with them and turn to our mother or myself instead and tell us how cute Caley is).

Cute is a dirty word in our family. But it doesn’t have to be. You see, the only things that make that word as negative as it is the fact that it reflects a broader societal narrative. And that narrative is that people who are disabled, whether due to autism or otherwise, are inherently not competent. If you change the narrative, you change the connotation of the word and all of a sudden I can tell my sister that she really does look cute in that frog beanie without making an implication about her competence.

I guess what I’m saying is, when we meet someone with a disability, we all need to presume competence. I’m not saying we shouldn’t give accommodations when they’re needed. We should. But when it comes to interacting with people with disabilities, we should judge based on the person in front of us instead of based on stereotypes, talk to the person instead of about them, and address them with the respect that someone their age – or even better, any human being – deserves.

Caley’s got a sticker stuck to the door of her bedroom which reads, “When you see, meet, or think about a person with a disability, PRESUME COMPETENCE.” She told me that she put it there as a reminder to herself that she is a competent human being, despite the narrative that tells her otherwise, but let it be a reminder to all of us now.

When you meet someone with a disability, presume competence.

#presumecompetence #differentnotless

5 Comments

Search the site...

Never Say Never

Caley

Self-Advocacy is Only Half of It – On the Importance of Listening

Presuming Competence: What Autism Professionals Need to Know

No deadlines on progress

Believe

I Cannot Call My Sister Cute: Autism and Infantilization

About Creigh

Top Posts

Categories

Blog Info

Archives