Tag Archives | communication

Letting Go

I’ll admit it.  I have trouble letting go of the people I support.

I put a lot into the jobs that I’ve had. I’ve seen some difficult stuff, and I like to think that if I just try hard enough, I can save everybody from whatever struggle they’re going through.

But, of course, I can’t. That’s always been difficult for me to accept.

Two Kinds of People

Some people don’t want to be saved. That’s fine. I can let go in those circumstances. I let them know that they have options, and I offer to help them pursue the options in which they’re interested. If I feel that they truly understood what’s available to them, I can feel satisfied  that I did my job, whether they felt compelled to take any of those options or not. I can let them go.

It’s harder when I feel like the person doesn’t truly understand their options, or doesn’t understand what will happen if they make a choice (or fail to make a choice). Sometimes, as much as I try to make choices and consequences clear to a person, they just can’t (or won’t try to) understand. Or there have been times when someone has said that they understand, when they really don’t.

During those times, I believe that it’s on me, as the support person, to find more effective ways of communicating important information, or to find out why the person is hedging on trying to truly understand important information or make a choice about it…or lie about understanding information.

This sort of work can be very difficult. It’s incredibly worthwhile. But it’s draining.

Learning that I’m Not Perfect

And when I just can’t make that connection, and facilitate that understanding for a person…that’s when I have the most trouble letting go.

I expect that everyone who works in a social services setting has to learn lessons like these. I could never seem to quite get it.

Perhaps I’ll learn it all better in the next social services job. Even if that’s not my next *job*…I doubt I’ll stay away from social services forever…

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So, What Are You Thinking?

Sometimes I wonder what the people I’ve supported who have intellectual disabilities are thinking.

What Lengths Would You Go to in Order to Make Your Wishes Known?

The people with profound intellectual disabilities, who don’t communicate verbally and need a lot of assistance with activities of daily living…I’m convinced that if they were suddenly given the to communicate verbally, they’d probably ask us why the hell it takes us so long to pick up on the other ways that they try to tell us things, and then promptly tell us to fuck off.  I probably would – for all the times that people insisted on feeding me food that I didn’t want, or sat me in front of the TV when a show that I hated was on, or didn’t realize that I was crying because I had a toothache, not because I was sad and needed a hug.

Just imagine a scenario where you have a strong preference about what happens, and imagine the frustration on not being able to communicate if someone *gets it wrong*. Over and over. Of course, they can’t help it that they can’t understand the ways that you try to communicate your preference, so it’s not their fault

But it’s your fault, either. Did you ask not to be able to talk?


(Just for the record…working with people with the sorts of profound intellectual disabilities that I talking about can be very difficult. In my attempt to illustrate a point, I don’t mean to imply that the people that provide sensitive, compassionate care at home and in group home, hospital, and school settings don’t do a good job, because there are certainly many, many people out there who take that job very seriously are excellent at it. I did a personal care placement in a group home; I know it’s not the area of support in which I’m strongest, even when I was working without disabilities. It takes a special person to do that important work, and thank God there are people that love doing it.)

Giving People with Intellectual Disabilities Control by Watching for the Ways in Which They Communicate

I worked one summer at a camp for adults with intellectual disabilities. One week, I worked with Gertie, a woman in her 70’s. I liked her. She was in good shape for her age, she was tough, and despite a speech impairment, she let it be known what she wanted (which was mainly a cup of tea after every meal and an afternoon nap.)

But her programming notes indicated that in order to have her cup of tea at a meal, she had to have at least two glasses of milk, juice or water at the meal, to be sure that she stayed hydrated. She didn’t like that, and drank very grudgingly. During lunch on our third day together, when she was working on her second cup of juice, I started to notice the glares she was giving me. They got meaner and meaner.

“Uh…anyone want to switch it up this afternoon?” I asked. “I’m kind of getting a vibe that Gertie has had enough of me. Is that it, Gertie?  Are you sick of me?”

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“Tea,” said Gertie.

Thankfully, another counselor was willing to spend the afternoon with Gertie if I went to Swimming with her group. By supper time, Gertie had stopped glaring at me. But if I’d been her, three days of some youngster not letting me drink my tea until I’d forced down two glasses of sicky-sweet juice would have left me glaring too.

Another man that I worked with for just one day that summer arrived with a notation in his file that said that although he didn’t communicate verbally, we would know that he was anxious because he would grind his teeth.

“How am I going to know if he’s grinding his teeth?” I thought as we unpacked his bag together.

I found out soon enough, when he started grinding them so violently that I could hear him on the other side of the cabin. This continued the entire afternoon.

I went to my supervisor after dinner and said, “I’m not taking my evening off tonight. I’m the one who’s been with him all day, and I’m not comfortable tossing a new person at him until he’s feeling okay enough that the teeth grinding stops.”  (It didn’t occur to me that maybe I was the one making him anxious, but it didn’t matter anyway. My mother took a turn for the worst that night, and I had to leave camp quickly to go to Toronto).

The Point

People with profound intellectual disabilities especially don’t have a lot of control over what happens to them. Service providers check themselves more and more these days, to be sure that they’re giving people they support as much choice as possible (not that we should have the power to “give” or “take” something that is rightfully theirs, but I hope you know what I mean.)   When someone is highly dependent on others for care, particularly when they can’t communicate, keeping that high level of personal agency present in care is difficult.  But it’s *vitally* necessary.

Because it’s got to be terrible not to be able to make your wishes known verbally. We’ve got to be very observant when we work with people with intellectual disabilities who can’t communicate verbally, to pick up on any signals that may consistently indicate a state of mind or a desire. It’s the least we can do, really.


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Social Services: The Risk to Clients When Systems Fail

When I was getting my certification to work in the field I do now, several of my teachers seemed (to me) to have a bias against social services agencies stance that infuriated me. At that point, I had volunteered for several years for a social services agency of whose I was very proud. I resented the suggestion that its work was actually setting people with disabilities back instead of moving them forward.

Still a Need for Social Services Agencies…

Agency supports are sometimes necessary to assist people to “put the pieces together”…

I understand now that my professors weren’t necessarily biased against social services agency supports, but were rather trying to get us to question a widely-held assumption that only agencies and “workers” can provide people with disabilities with what they need. The opposite is true. There’s no reason why the community, its members and social services agencies that haven’t traditionally provided services to people with disabilities can’t provide support that agencies like the ones for whom I’ve worked and volunteered traditionally have; it’s just that the wall of, “Oh, he/she Is one of *theirs*” has always stood in the way. Agency involvement sometimes keeps the walls to true inclusion in communities standing.

However, no matter what vulnerable group you’re talking about, the nature of our society dictates that there are always going to be people out there who need support who may not be able to find it (or enough of it) from family or friends or other informal systems. The world still needs social services agencies and the supports that they provide.

…But Also a Need for Change

And despite budget cuts and legislation and other changing realities, agencies have to find ways to provide effective and thorough support, or we hear terrible stories like the following. Just a warning; I found this story very difficult to read. But please read it, especially if you live in Canada. People need to know just how easy it is for families to fall through the cracks, and just how little a voice children (especially children with disabilities) can have regarding what they need when there are lots of other needs in a family.


It’s almost physically painful for me to think about what the days after her mother’s death must have been like for this poor young woman. Alone, already significantly neglected and unable to hear because her hearing aids weren’t working, not understanding what had happened because of Down’s Syndrome, trying to feed her mother’s body and administer her medication…it’s a heart-breaking story.

Some Things Should Never, Ever Happen

And a shocking one. Several social services agencies from various British Columbia government Ministries were involved with this family. There’s no way that something like this should have happened, ever. The British Columbia children’s watchdog has already made a report to the Premier about her recommendations based on this incident, including better communication between Ministries when it comes to supporting children with disabilities in the province. Hopefully this will prevent children from falling through the cracks the way this child did.

There are lots of people who support children with disabilities who do wonderful work. They need to be a part of system that allows them to do that work effectively, so that something like this never happens again.

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10 Simple Disability Sensitivity Tips

Last week, in my post on invisible disabilities, I started to touch on disability sensitivity. I’d like to talk about it some more today.

We’re Not All Good Teachers

When my sister and I were old enough, my father took it upon himself to teach us both how to drive our family’s standard- transmission pick-up truck. I, the eldest sibling, was the first student.

I came back from our first session crying. My sister, a little more “take no prisoners” at that time in her life than I was, drove back to the house, dropped Dad off, and told him she’d learn by herself on our back road.

My father was well-meaning, but had been driving vehicles with a standard transmission since he’d gotten his license. He couldn’t understand why the process didn’t feel as intuitive to us as it did to him. I couldn’t get the timing right and kept stalling the car; Rachel kept making the truck “bunny-hop”; he knew what he wanted us to do, but it was so second-nature to him that he couldn’t explain it, and just got frustrated with the whole teaching experience in general.

I wonder sometimes if people who feel somewhat lost about how to act around people with disabilities feel like my sister and I did. Workers in the disabilities field get so used to talking and thinking in a certain way about what we do (in part due to current thought about disability sensitivity) that sometimes I think we struggle to remember exactly why we think that way, and struggle even harder to explain it to other people.

I’ve put together a list of ten disability sensitivity tips. Practicing them is now “second nature” to me (partly because I can now speak from “both sides of the fence” now), and I’ve tried to clearly explain why, to me at least, doing so is so important. We’ll cover five of them today.

Disability Sensitivity Tip #1: Keep Language Positive

Over the years, I’ve become the first to argue that negative words damage us only as much as they let them. But a society that’s made a commitment creating a culture where all people can feel included, particularly when some disabilities preclude people from understanding the terminology used about them and advocating for the use of different terminology if they choose, needs to be aware that words shape perceptions (whether we like it or not). In this blog, I’ve been using “people first” language as part of my practice of disability sensitivity; it doesn’t always flow as well, but it emphasizes that there’s more to the person than their disability. See this link for more information on people-first language: http://www.asha.org/publications/journals/submissions/person_first.htm.  Speaking this way feels a little unnatural at first, but soon becomes easier to do without thinking.

Advocacy groups are trying to reclaim some of these words, but it’s good advice to avoid them altogether: cripple, gimp, victim, retard/retarded, spastic/“spazz”. See the above link for a more complete list.

Disability Sensitivity Tip #2: Ask Before Touching Someone

At a barbecue, I went to get out of my lawnchair and commented that it was a bit of a deeper chair than I was used to. The next thing I knew, someone was trying to lift me out of the chair by my armpits. The sense of physical invasion made me furious, and ruined my evening. It’s not like I wasn’t used to getting assistance from people, but I was used to being asked whether I wanted it first, and I was used to my nurses telling me exactly what they were going to do before they did it.

I realize that this is an area that makes people especially uncomfortable. I was uncomfortable with it, back in my pre-stroke days. What *do* you do when it looks like someone need help? Do you risk offending him by giving it and implying that you don’t think that he’s capable? Or do you risk offending her by not giving it when it turns out that she really does need it?

Simple answer: Ask, “Can I help you? Do you need some assistance?” Ask especially if you’re going to have to touch the person, because many people assume that it’s just okay to touch someone with a disability without asking. If you ask me if I need help and I say “Yes,” tell me exactly what you’re going to do.

(And if I don’t thank you afterward for helping me, *then* you can slap me around a bit. I’m kidding. Don’t ever do this. To anyone.)

For some disabilities, giving physical assistance without being trained can result in serious injury to you or the person you’re trying to help. Don’t worry about disability sensitivity in these cases. If in doubt about whether you can assist safely or correctly…err on the side of caution and go find someone who can.

And if you ever ask someone if they need help and they’re rude to you…be satisfied with knowing that you a nice thing, and know that you’ve just come across a rude person. Even people with disabilities can be rude. Perhaps the person was just having a bad day, and it’s too bad you got caught in the crossfire…but you did a good thing.

Disability Sensitivity Tip #3: Don’t Touch Other Peoples’ Mobility Aids

People are fascinated with canes, wheelchairs and walkers. They’ll sit on a friend’s walker, or lean on their chair, or pick up a cane and just start playing with it. That sort of thing doesn’t bother some people. It didn’t bother me when I was in my wheelchair (but I didn’t really like my wheelchair.) But pick up my cane and start playing with it without asking my permission – that really bothers me.

I used to think that I was just quirky about this, until I read some books about disability sensitivity and etiquette that said that it really is a social faux pas to touch, lean on, or play with someone else’s mobility aid. These are the things that help us get around in the world – they’re often fitted specifically for us, and they’re very personal. When I’m out walking with my cane, it feels like an extension of my arm, so much so that I barely notice it.

If you’re tired and want to lean on someone’s wheelchair (or sit in it, if they’re not), or you’re curious about their cane or walker and want to look at it: ask them if it’s okay before you do it.. They may not be comfortable with people touching something so personal without their permission.

Disability Sensitivity Tip #4: Talk *to* the Person, Not Around Them

There are few things more annoying than having people ask a question about you that you can answer to the person standing next you. And yet, it often happens to people with intellectual disabilities. I get routinely asked when I’m out in restaurants with people I support, “And what would he like?” I make a big deal of asking the person I’m with, “What did you decide to have?”, just to get a point across: He knows what he wants. Ask *him*.

My friend Martin experiences this as well. He had a stroke after a car accident, can’t speak very well and is in a wheelchair. He’s “all there” – he understands everything that’s said around him, and he can answer. But people don’t give him the chance to. His physical disabilities cause people to assume that he doesn’t understand what’s being said to him. They talk about him, to whomever’s with him – “How’s Martin today? And what does Martin want to eat?” – and barely look at Martin.

Even if you don’t think that a person with disabilities is going to understand, address questions about her to her. Speaking directly to the person isn’t just the polite thing to do, but it’s the best way to communicate with someone with a hearing impairment (and who knows? That may also be an issue for her.) If there’s a person with her and she doesn’t understand the meaning of your words, the other person will step in if assistance is needed. If there isn’t someone there and she appears confused, ask her if she understood, and repeat your question. If you can’t understand her response, tell her that you didn’t understand and politely ask them to repeat her question. If you really can’t open a line of communication, ask her if it would be okay if you got someone to help you to understand what she needs. Practicing disability sensitivity in this way goes a long way toward making people feel acknowledged and like people value what they have to say.

It’s really all about polite treatment, which is what you’d give any person. Why should a person with disabilities be any different?

Disability Sensitivity Tip #5: Observe Proper Etiquette Around Service Animals

“Service animals” are not just guide dogs for people with visual impairments anymore. Dogs are being trained to assist people with physical disabilities to live independently, to support people who have severe panic attacks, and to even help keep people safe when they have seizures or blood sugar disturbances. They undergo special training through agencies and again when they are matched with owners, so that owner and dog function as a close team. The dogs are working when they are out in public and can’t be disturbed.
Unless you have its owner’s permission, NEVER:
• Pet a service animal
• Feed a service animal
• Allow your own animal to get too close to a service animal
• Otherwise distract a service animal while it’s working.

Disability sensitivity is easy to learn and important to practice. We’ll continue to talk about it later this week.

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Someone In There

I watched “Awakenings” this weekend, which is a movie about people with multiple and profound disabilities. It’s one of my favourites, though not one I watch very often.


“Awakenings” tells the story of Dr. Malcolm Sayer (based on Dr. Oliver Sacks) and the success of his idea to administer the drug L-Dopa to a group of people that had survived encephalitis. The people in question were hospitalized for essentially being “living statues” – unable to move or communicate, unresponsive to most stimuli, and assumed to lack capacity to respond to the world on even the most basic level. High dosages of L-Dopa caused an “awakening” in these “statues”, bringing them back (albeit briefly) to a place where they could interact fully with the world again.

“Feed and Water Them”

I know from reading reviews of “Awakenings” (the movie) that the science behind it is representative of what went on in Sacks’ actual experiments. That’s interesting, but it’s not what was has me thinking that I would like to read Sacks’ account of his work (also called “Awakenings”); I’m more interested to see if his motivation for starting work with  these patients was the same as the Sayers character’s in the movie. Sayers, played by Robin Williams, observed signs in the “statues” that convinced him that there were people inside them, despite their profound disabilities, that could be reached: they caught objects, they exhibited purposeful behaviour, they responded to music (but each one to a different type of music) and to touch from others. No one had ever noticed before, because no one had taken the time to try to see if there was a way to reach these people.

“We call this ‘The Garden’” an orderly explains to Sayer about the ward on which his patients reside. “Because all we do is feed and water them.” Everybody, even the doctor who had first identified encephalitis as the cause of the disabilities (Dr. Peter Ingram, in the movie), figured that there were no longer people in those bodies to reach. Sadly, I still see the “feed and water” perception about people with profound disabilities from time to time.

I’ve spent the better part of an hour now looking for a website that I found just after the last time I watched “Awakenings”, several years ago. I haven’t been able to find it, but I remember being very moved by it.  The young woman who wrote it had lived with profound disabilities and been unable to communicate for over half her life, and then become able to; her thoughts about how frustrating it had been to live in a world where everyone assumed that she was just an empty body with no awareness of her surroundings were eye-opening and heart-breaking.

Connecting with People with Profound Disabilities

I absolutely believe that even if all evidence is to the contrary, we have to assume that people are “in there”, and that it’s incumbent on us to, as much as possible, to figure out how people communicate and how to communicate with them. I don’t know any people with the specific brain damage that the people in “Awakenings” lived with, but I know plenty of people with profound disabilities that are totally reliant on others for their care, that can’t coordinate their limbs to the point where they can propel themselves in a wheelchair or reposition if uncomfortable, and don’t communicate in any traditional way. I’ve had discussions with people (discussions that have broken my heart) who don’t believe that people living with profound disabilities should have been allowed to live at birth.

The thing is, people with profound disabilities *do* communicate; I’ve worked with several of them, and I’ve seen it. One used to purse her lips suddenly as I helped her to eat, which I took to mean, “No more.” Another cried when certain types of music were played around him. And Frances, who I called “my dancer”, loved to sit on the couch in her family’s living room and stretch her long, graceful arms over her outstretched legs. She’d move her arms forward, and open them up, and turn her torso to stretch further…bring her arms together again and peek at me from underneath one of them, smiling widely. Sometimes I’d hold her hands as she moved, so that we did a dance together.

She loved to move like this; she didn’t even need music. I loved watching her.

Assume Someone is “In There”

In “Awakenings”, the Peter Ingram character says that the virus that had turned Sayers’ patients into statues “did not spare their higher faculties”. When Sayers asked him how he knew this, Ingram says, “Because the alternative is unthinkable.”

It’s more “unthinkable” *not* to consider the alternative, and potentially leave a person who wants to engage with the world without the opportunity to do so…when it may be entirely possible for us to help facilitate that engagement. This is one time when it’s *always* okay to assume – assume that someone’s “in there”, and that there’s a way to reach them.

Rent “Awakenings”.  It’s a great movie: http://www.imdb.com/title/tt0099077/

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Finger-Spelling, Part II

I didn’t intend to write about the rest of “Finger-Spelling” quite so soon…but the piece that I posted yesterday about my experience of physical restraint in a hospital got some strong reaction, and I feel like I need to finish what I want to say about it.

A couple of things, though…

Nurses Rock

First, I’m over what happened to me that day, and what I’m going to talk about today. Neither story paints nurses in a good light. I had three bad experiences with nurses in seven months; the rest of the time I found that my nurses were amazingly sensitive and dedicated, despite being chronically overworked and assigned far too many patients on a shift. I saw patients hurl a lot of abuse at them…I even apparently yelled at a nurse one night to just leave me alone because I was never going to going to walk again anyway, why was she still in my room, get out, etc (I have no memory of this.)…and some days I wondered why they’d ever wanted to be nurses. I have a tremendous amount of respect and gratitude for the nurses who took such good care of me (and of other family members when they’ve been ill).

Ask, Don’t Assume – Kathie Snow Rocks, Too

Secondly, I want to link to this article by Kathie Snow, of the Disability is Natural movement, because it explains so well the point that I’m trying to make by telling these stories of being restrained in the hospital: If we simply try to communicate, listen well, and don’t make assumptions, we have a much better chance of truly understanding a person’s needs and responding to the person appropriately.


It’s an excellent article for *everybody*, not just people who work with disabilities.  I’ll use the story of my second physical restraint experience to illustrate how important it can be to ask, not assume.

A Bad Headache and a Grumpy Nurse

I was in what they call the Neural Step-Down unit at this point. I had a roommate, who’d also had brain surgery, but I didn’t get to know her very well; we were both sleeping a lot, and she got to go home long before I did. One night, not long after the surgery, I couldn’t get to sleep because my head hurt too much. I felt like someone was trying to open my head with a screwdriver.

My nurse was already annoyed with me. My call button wasn’t working, and it had been going off all by itself all night. I kept trying to tell her that it was broken, but she didn’t seem to believe me. When I actually did call her in to see if I could get more pain meds, she very shortly told me that I’d had all that I was allowed to have and I would have to wait.

Now, the unfortunate thing about the stroke-affected mind is that, especially at first, it doesn’t realize what’s happened. I’d have certainly fallen if I’d tried to stand up, but in my mind I could still walk. I decided that if I couldn’t have any more pain meds, I needed to take a walk to clear my head. So I sat up in bed and tried to take down the bedrails.

The nurse happened to be passing by, and saw what I was doing. She was furious. She talked about how she had too many patients to be constantly keeping an eye on me, making sure I wasn’t trying to get out of bed – as she tied my wrists to the bed. I cried myself to sleep.

Later, another nurse took the restraints off. I told my sister Rachel what had gone on when she came in the next morning. I don’t remember this, but my roommate told us that I’d stated explicitly the night before to the nurse that I’d not wanted physical restraint of any kind used on me.  Rachel talked to management about what happened. They apologized that I’d been upset, and that she’d been upset.

I got told this later. Rachel apparently said, “Upset? You haven’t seen upset yet. My father’s going to hit the hospital in about 45 minutes and then you’ll see upset.”

Dad talked to management when when he arrived, and I never saw that nurse again; I believe they sent her to another floor. But I was so terrified about seeing her again the next night that Dad spent the night in the waiting room, in case something happened.

The Point

I understand that the nurse was concerned for my safety and likely feeling stressed out by the demands of the shift. But I truly believe that if she’d sat down with me for two minutes, and listened to my reasons about why I’d been trying to get out of bed…explained that I’d fall if I tried to walk around… and said she’d try to get more pain meds ordered, even if she’d had no intention of doing so…I’d have stopped trying to get out of bed and just cried myself to sleep, without the trauma of  physical restraint. That two minutes of listening with no assumptions would have made all the difference.

I’ve taken a lot away from those experiences in the hospital. Knowing what it feels like to be restrained myself has really shaped my beliefs on the use of physical restraints (restraint of any kind, actually) in vulnerable populations – it should be the last resort in a situation. It’s also changed how I view “problem behaviours” in the people I’ve worked with. If a person doesn’t communicate easily, I ask myself, “What could be going on that’s bringing this out? Is he too hot? Is it close to a mealtime and she needs to eat? Is there someone around that he doesn’t like?” Even in people who are non-verbal, you start to observe patterns once you get to know them…and there are all sorts of “listening”…

But I digress. For those of you who found the restraint stories difficult to read, I apologize. I posted them hoping that we could take something positive away from them about assumptions and communication and listening (and link to Kathie’s fabulous article), but I forget that people sometimes find that sort of thing upsetting…

I’m not around much this weekend, so I’ll see all of you on Monday. Enjoy your weekend…thanks for making this such a great first week!

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My Brain AVM Story: In the Recovery Room

After the open-brain surgery to fix my brain AVM, I awoke in the recovery room to find myself still intubated. They didn’t want to extubate me, my father explained to me, because they might need to go back in and see if they could get they could get a little bit of brain AVM that they hadn’t been able to get the first time. Did I understand that? Blink twice if I understood.

I understood. I blinked twice.

Blink twice if you give consent for them to do that.

Blink. Blink.

I understood that this brain AVM experience might not be over.

Plastic on my Tongue

So I lay in the recovery room with my Dad and my sister, Rachel, with a tube down my throat. I knew that the tube was a necessary evil; we’d been through this with my mother a couple of years ago. But I didn’t know from our experience with Mom that when there’s a tube in your throat, there’s also an annoying piece of plastic pressing down on your tongue. I couldn’t get my tongue around it and I really wanted someone to move it.

But when my hand went toward my mouth, the nurse assumed I was going to rip the tube out. “Don’t let her do that!” she said sharply, and suddenly Rachel had grabbed my arm. “You need to leave that in,” she said.

I don’t remember what I was thinking. I was probably on auto-pilot. My brain, in its post-surgery wisdom, decided that I should start finger-spelling to mybrain avm sister. After all, we’d both been Brownies. She should know what I was doing.

“Plastic on tongue. Move it.” Was what I meant to sign. I got through “Plastic” before Rachel started shaking her head.

“I don’t know what that means,” she said.

My heart sank. I just had surgery and still have some brain AVM in my head and I remember how to finger-spell, I thought. Why don’t you? I scanned the room for the nurse. She appeared to be helping someone else. I thought I had some time. I tried to open my mouth, to point at my tongue.

“We’re going to have to restrain her,” the nurse said, suddenly. She’d come out of nowhere!  The next thing I knew, my wrists were being tied to the bed.

“They’ll Just Put It Back In”

I wasn’t done yet, though. I wasn’t even thinking about the news that there was still some brain AVM in my head and that I might need more surgery. I just really, really, just wanted someone to move the piece of plastic off my tongue. Convinced that I could make Rachel understand if she’d just watch my finger-spelling carefully, I managed to work one of my hands out of the restraints.

The nurse caught me immediately. “Oh no, you don’t,” she said. I didn’t have a chance of getting out of the restraint this time, I soon realized.

“You can rip it out if you want,” Rachel said, her eyes sad. “But they might need to get the rest of the brain AVM today, so they’ll just put it back in.”

(Looking back now, I realize that I had every right to insist that the tube be taken out…not necessarily by me, but that’s another story. I’d already consented to having another procedure done to get the rest of the brain AVM if necessary, but I could have changed my mind about that at any point and rendered the tube unnecessary, unless there was a reason for keeping it in that I wasn’t told about. But if l knew that at the time, I wasn’t thinking about it.)

The Frustration of Not Being Able to Communicate

That was the first time I was restrained in the hospital. If I’d known how to communicate what I wanted, I sure would have, because I didn’t have any intention of ripping that tube out of my throat by myself, even with the fearful prospect of more surgery looming over me, and there really was no reason to restrain me. I don’t remember what happened after that, but I imagine that I went to sleep fairly quickly. I was, after all, just out of over 12 hours of brain surgery.

The second time I was restrained was a little more dramatic; I’ll tell that story another day. But here’s something to think about: If you had a disability that left you unable to communicate with people (or unable to communicate effectively with people), what behaviours do you think the frustration would drive you to? What assumptions do you think people might make about how are you in general based on those behaviours? Would those assumptions be true?


Oh, I do remember something else about that day…my father said, “None of your mother in you, is there?”

That’s probably one of the nicest compliments I’ve ever gotten.

Afterthought: They never did go back in for the brain AVM. That is a story for another day.

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