Thursday, January 29, 2015

When One Door Closes ...

I'll bet she closed the door behind her.

I got the email this morning. A woman I worked with many years ago, a woman who taught me one of the most important lessons of my working life, has died. I hadn't seen her for many years, I occasionally heard of her from staff who I'd run into at conferences or lectures. She is one of the many people who's name always brought a smile to my face. I'm not doing that 'the dead are suddenly saintly' thing that people do - her name, her memory, always lifted me and gifted me.

She had been referred by a frustrated group of staff. She was 'aggressive' and 'destructive' and 'impulsive'. I was fairly new to being a behaviour consultant and reading these descriptors had me on edge. I was surprised at how small she was in real life because believe me she was writ large in the minds of her staff and care providers.

Sitting to meet about her I listened about her obsession with the door of the how, with any door, any where. If someone was leaving the house, she'd leap up and run as fast as she could to the door and grab the handle and open it wide. If someone knocked at the door she'd run as fast as she could, pushing staff out of the way, to get to the door - she's open it and hold the door open with one hand and swing the other open in a wide gesture of welcome.

This was 'reinforced' by people who came in by saying, 'Wow, you are a real welcoming committee aren't you.' or 'What a great way to be greeted at the door.'

They lived in a smallish town and she'd do the same when out, when seeing someone approach a door, she'd rush to open it for them. Give them a grin and wait for them to go in. She never ran across the road, she wasn't so impulsive that she forgot the rules of the road, nor was she so impulsive that she knocked people over as she rushed to the door. The 'aggression' seemed to happen at home, if staff were in the way when she wanted to get to the door, or if staff tried, as they had, to stop her from her 'inappropriate behaviour.'

I went on a trip with them to the nearest city and had the delightful experience of watching her discover automatic door openers for the first time. She laughed so delightedly, as if she'd discovered the most wondrous of things and couldn't contain her joy! So, learning how they worked, made trips to the city such that she'd need to push those buttons for people.

After my observations had been done and I sat down to write the 'behaviour programme' I realized how nice it was to be working on a behaviour that wasn't about 'hitting' or 'spitting' or 'kicking' or any of the other kinds of aggressive behaviour that I was used to working with. Midway through the programme it struck me that this behaviour was a 'gifting' behaviour. It wasn't aggressive, it didn't have the goal of intentional hurt.

I threw out what I wrote and set about writing a teaching program for staff to accept the behaviour as an expression of her wish to welcome, her wish to assist and her wish to be helpful. Those are all wonderful qualities. We should be encouraging not eliminating these behaviours.


That's what I wrote.

And that's what I got yelled at about when I presented it to the staff.

But, that's also part of the job - dealing with staff aggression.

Once they got it, really got what I was saying, they learned to see the behaviour in a new way. We noted that she wasn't taking away anything from others in the home, none expressed any interest in answering the door or opening ti for others who left. She only pushed in rushing, she never pushed in anger. Staff needed to get out of the way, invite her to get the door, and let her give what she had to give.

Simple, easy.

I came away from that with the vow to remember that sometimes what we see and what we think we see are different things.

I am convinced, convinced, that as she left us for heaven she closed the door on one world and raced to open the gates of the next.

Wednesday, January 28, 2015

Diversity Done Right

You've all seen those pictures of kids with disabilities sitting way off to one side when the school photo is taken. You've all read about the lack of diversity, well, everywhere. How about let's take a look at diversity done right. It's fun, it's inclusive and, I don't mean to go all Ellen on you, it's gonna want to make you dance!

for those who cannot see the video, here is the link:

There is no dialogue, the teacher and students are dancing to a song called Uptown Funk.

Tuesday, January 27, 2015

Conference Information: Trauma Informed Care

For those interested, Vita Community Living Services is hosting an exciting and powerful conference on Trauma Informed Care.

March 24th 9:00 to 3:30

Cost: 50.00$

Trauma and People with Intellectual Disabilities: Support Strategies for Healing and Recovery through Trauma-Informed Care

Traumatic events can happen to anyone; they are part of the human experience. Sometimes the impact of these events does not diminish over time but can result in long-lasting trauma. Some survivors may develop harmful or negative behaviours in an effort to cope with the emotional and psychological impact of their experiences. Research shows that people with intellectual disabilities are at higher risk of abuse than the general population and have often experienced events that can result in lasting trauma through frequent and/or unexplained moves, extended hospitalizations, invasive medical procedures, bullying, institutionalization, separation from primary relationships, physical restraint or punishment at various times in their lives.

When supporting someone who has experienced trauma it is important to understand the impact trauma can have on a person and their behaviour, and to provide supports that promote healing without unknowingly triggering further trauma responses. Incorporating a trauma-informed approach into services that support people with intellectual disabilities is essential to promote healing and recovery for the people we support.

Participants will develop an understanding of trauma, the impact trauma can have on individuals with intellectual disabilities, and the principles of trauma informed care. Concepts of assessment, support and treatment will be explored through lecture, video, group discussion and activities and will be further illustrated by the story of one woman’s journey through developmental and trauma services. Specific tools and support strategies will be reviewed and participants will have the opportunity to try out several of the tools/strategies while relating those to specific individuals they support.

Learning Objectives

By the end of this training participants will have the knowledge and tools to be able to:

Understand the prevalence and impact of trauma in the lives of people with an intellectual disability

Apply a trauma lens to their understanding of, and response to, challenging behaviours

Incorporate a trauma informed care approach in their daily work with people who have been impacted by trauma.

Effectively use a number of strategies to support people with intellectual disabilities in their journey of healing and recovery

Presented by

Melissa Otter is a Self Advocate and Trauma Training Facilitator who has presented at numerous conferences and workshops for staff and self advocates across Ontario. She is a member of the Trauma and Developmental Disabilities Committee of Central West Region and is a co-facilitator of the peer support group The Wonder of Me. Melissa is passionate about sharing her experiences to help others in their own journey of healing.

Cathy Kuehni is an Intensive Behavioural Consultant for Family Counselling and Support Services in Guelph. Among many things, Cathy’s role includes, walking alongside families and individuals with developmental disabilities who are in crisis, developing and practicing coping strategies with all involved; transitional support; and trauma training.

Donna Lee is a Behaviour Therapist with over 20 years experience working in the fields of developmental services and mental health. Donna has a Master of Arts in Critical Disability Studies and teaches online with Ryerson University’s Disability Studies program. She currently works at Dartmouth Adult Services Centre, as the Client Support Specialist providing behavioural support and staff training.

For the complete conference description, learning objectives and registration information please contact Rose Castronovo at

The Bus Stop

We first spoke when he asked me a question about my chair. I thought, at the time, that his purpose in starting the conversation wasn't so much to get information about the chair, it seemed as if he saw me as another other in the coffee shop near where I live and that he wanted contact. It was like a moment of solidarity. We both are different, we don't have to be different alone. That he had an intellectual disability and I a physical one was of no importance.

Since then I've seen him on several occasions as he waits for the bus at a stop that I routinely pass a couple times a week. We always wave and occasionally, if I'm not rushing, we have a brief chat. It's a nice bit of connection. For both of us. I like the neighbourliness of it.

Then, a couple days ago, I was rushing to an appointment and I saw him standing at the bus stop. He wasn't alone. There were a group of kids in their early teens beside him and behind him. I couldn't hear what they were saying, but I could see that he looked distressed. He was IGNORING them and the way he ignored them gave them so much encouragement. That's the problem with ignoring - it's a visible response that says 'I NOTICE YOU AND I DON'T HAVE ANY OTHER WAY OF DEALING WITH YOU.'

The internal tussles, I need to admit to, of "should I or shouldn't I" and "I don't have time" lasted only a couple of seconds. I slowed up. I caught his attention. He waved as he always did. I came over to him, asking the kids to move so I could get my chair past them and stop beside him. I asked him casually how long he'd been waiting for the bus, he said that it had been about five minutes. The kids sized me up and down, decided that I wasn't an easy adversary. When they heard me say, "Well, why don't I wait here with you and we'll just chat," they took off.

I don't know what their aim was.

I don't know why they were swarming him.

I don't know if anything really bad was going to happen.

But I do know that I have a responsibility to care for the people in my neighbourhood, disabled or not. That's what "neighbour" means, at least in my dictionary.

The bus came only a couple minutes later. He thanked me for stopping to chat. I took the thanks and rushed off. I was only a minute or two late for my meeting. Which meant I was there before anyone else.

Bullying can't happen when people of good will step in and step up. Bullying can't happen when people see and take action. Bullies depend upon the inattention and the inaction of others.

It only takes a moment, sometimes, to be part of the solution.

Sunday, January 25, 2015

The Ride Home

I hopped on the subway, heading home. The moment I entered the car two out of the three people who were sitting in the parking area for wheelchairs got up and folded up their chairs. The third, the one at the end, did not. She was sitting in the primary seat that allows access to the space, with her there, even with the other two empty, I cant get into the space. I ask her, nicely, if she could move so I could use the space. She takes her ear phones out, looks at me, puts them back in and stays seated.

I roll back and hold on to another rail, extremely aware that I was a bit unstable and that I was in the space of a lot of people. Fortunately for me, not her, the energy and focus in the car was directed towards her sitting in that seat. Suddenly, she began to cry, not loudly. She wiped at the tears on her face looking extremely embarrassed. We came to the next stop, I had to scramble to get out of the way of the door to allow others out and others in.

At this point a woman sitting in the next row got up, reached over to her, tapped her on her shoulder to get her attention and then pointing at the wheelchair symbol, prominently displayed, and then indicating that I needed that space. She got up quickly and moved. I moved into that space, it felt good to have a good grip and to be out of everyone's way.

I felt terrible when I saw the woman sitting there crying. I had no intention of upsetting anyone. I hadn't been rude, I hadn't made comment to her, I just moved to another space.

Joe said that he thought the tears had nothing to do with what happened.

And even though I don't understand what happened, I think that the tears were a result of our encounter, my request, her refusal.

Sometimes I want to simply ride the subway. Get on, get into the designated space for wheelchairs, and ride. Too often needing specific space, even space clearly designated, brings with it interactions. Some requiring and deserving thanks. Some requiring a bit of assertion and conflict. Some, like this one, that are just baffling.

All I want is to ride, like everyone else, in silence and anonymity.

That's all.

Saturday, January 24, 2015

Unmovable Resistance

There was a crush surrounding the table. Ruby and Sadie had managed to make it up to the front to both see and touch real fossils from a dinosaur hunt in Alberta that had led to the discovery of a whole new species of dinosaur. We'd just previewed an episode of a new television show Dino Hunt so everyone was excited to see in real life what they had just seen on the screen.

As is typical it was hard for me to get to the table as people simply stepped in front of the wheelchair, such is living in that weird state of being highly visible and completely invisible at the same time. But I'm used to this so I was just slowly inching my way forward, being careful not to hit either parent or child. It was as I was doing this that I noticed two girls, I'm not sure if they were friends or sisters, but whatever they were they looked to be the same age. One was blond, the other had dark hair, both were very thin and beautifully dressed.

The blond one noticed me and leaned forward to say something to the girl with dark hair, who glanced at me while the blond continued to whisper and laugh. The dark haired girl noticed me notice them looking at me and looked away quickly. She said something back to the blond girl and a tussle ensued. The blond girl grabbed the dark haired on by her shoulders and tried to force her to turn around towards me. She met unmovable resistance.

Giving up, knowing that she was not going to be successful, she grabbed her phone and held it up to take a picture of me. Not wanting to be a young teen's Internet sensation I began turning my chair around. Before I could do so, the dark hair girl stood in front of the camera, denying the shot. This little battle continued only for a few seconds more before they were both called away by a woman who had been standing further away talking to a friend.

I do not wish to comment on the behaviour of the blond kid.

I wish to comment on the behaviour of the dark haired child.

Her behaviour is so commendable that I don't have the emotional vocabulary to say what it meant to me. Further, her behaviour demonstrated the power of 'one' to stop, to interfere with, the power of a bully. She took her role seriously, she saw wrong and she acted.

This takes courage.

Real courage.

This is a child that has the potential to grow up an into someone who will make a difference. I know that because she already has.

Friday, January 23, 2015

Today I Remember, Today I Pledge

Every now and then, in the moments just before sleep, I will remember standing in the centre of a graveyard for people with intellectual disabilities. I don't remember if I was there in winter or summer but it's always, in my mind, a cold day. One tree stood, in lonely vigil, near the centre of the land. There were no gravestones. No crosses. No markers. There was nothing there to indicate that was holy ground. Those who drove by would have seen what looked to a man standing in the middle of a small field.

The gravestones? They had been torn down and removed to be crushed and then put to industrial use. There was no one, they thought, that would want to grieve, that would want to remember. I could see evidence of this massive vandalization when searching the ground closely. Bits and pieces of gravestone could be found.

I left stunned and shattered.

First that these graves existed at all. That the institution, a huge one, which wrapped two arms around the graveyard, had been full and teeming with life. That people had been pulled from their families, pulled from their communities, and housed here. That people longed for freedom and instead ended up a few feet away, resting in a graveyard with neat graves in a row, like an eternal ward.

Then that someone, somewhere, sitting in an office writing a memo, after a meeting of other someones sitting in other offices, calling for the destruction of the markers, calling for the 'good sense' use of the material in other, more valued places.

It seemed that they counted on no want remembering, or, probably more accurately, no on wanting to remember.

Well I did.

Well I do.

Today is the International Day of Mourning and Memory.

Today I remember those who lived longing for freedom and getting, instead, captivity.

Today I remember those who while living in freedom were bullied to death.

Today I remember those who came to the community to find violence not welcome.

Today I remember those people who fought, and fought hard for the closure of buildings and and end to institutionalization.

Today I remember those people who fight against violence against people with disabilities.

Today I remember that there is work yet to be done.

Today I pledge to be part of the community of those who fight against violence and who resist the segregation and exclusion of people with disabilities.

I know today, that in that field, there is a memorial to those who were buried there. A memorial that was the result of others who came together to fight, and fight hard, for the right for people with disabilities to be remembered and to be mourned.

Thursday, January 22, 2015

Being Needed Con't

Yesterday's discussion was wonderful!


I don't have much new to add to what's already been said, and said well, in the comments. I just wanted to acknowledge the obvious, that the 'need to be needed' or 'the need to feel helpful' are needs that exist outside the paid care provider role. I think we all need those things, I think it's part of who we are as people. I know for myself that the things that I do for others, the things that make me feel needed, are amongst the most important reasons I have a good sense of self esteem and self worth - it just plain makes me feel good about myself to be helpful, to be needed, to have skills that are valued by others.

So when the care provider said, in the scene I presented yesterday, "I just need to feel helpful," they were simply being honest with the motivation behind their action. I think we all agree that the 'needs' that need to be met here are the individual with a disability who is being supported. But I think, too, that it would have been possible for the worker to have their needs, specifically the need to feel helpful, fulfilled too. This isn't an either / or situation.

Let me explain. For a brief time when I was back in University I did some work with kids in a special school. I giggle at those words now because, whatever else it was, it decidedly wasn't special, but I didn't know that then. I found that those moments when I was able to hold back my hands, hold tight to my tongue and simply be there as a supportive presence while kids did things on their own - to be there to see their faces turn to me, glad of a witness to their success, and smile was such an amazing thing. The teacher there, who had a face that never looked kind and a heart that always was, said to me, sometime the most helpful thing you can do, is wait.

We tend to see help as an action, as something done. Anyone who works with people who are learning new skills or developing independence needs to know that help occurs when inaction replaces action. Where waiting for a bright shiny new skill to show itself and be demonstrated. Those outside this field of endeavour simply wouldn't understand the joy behind this sentence:

I went to the store with JJ today and I stood there and did nothing while he paid for it himself.

Both needs could have been met.

Only one was.

That's the tragedy.


I want to address a comment made by Feminist Atavar, which was picked up by others later. The question was asked, "Why did I say anything at all?" The suggestion was that my statement could have, even though I didn't intend it, put pressure on both of the others in the store line up. That comment made me pause and think, 'Why did I speak up?'

I don't know the experience of other power wheelchair users, but my experience is that with my gender, my weight, and the way the power chair increases the sheer 'bulk' of me that people often feel pressure for some odd reason. As an example, on going, underground, between two halves of a mall, there are two ramps on either side of a step down walkway. When I appear at the top of one and look to see if it's free, it's narrow so only one person can use it at a time, if someone sees me up top, they nearly start running! Even people using walkers!! That's when I say, 'Don't rush, I'm comfortably seated,' or 'Take your time, I'm comfortably seated,' and typically people then slow down.

So when I'm in a line up and someone sees me behind them, I say it as kind of a joke, but also as a signal that it's OK, I'm really not in a hurry. I had hoped that was what happened here in this situation. However, I can see where maybe it wasn't helpful.

That's what I like about these kinds of discussions - I'm asked to think differently or more deeply - which is always a good thing.


Thanks to all who participated in the comment section!