- Member of Parliament
- Conservative
- Edmonton—Wetaskiwin
- Alberta
- Voting Attendance: 65%
- Expenses Last Quarter: $178,671.82
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- May/10/23 5:08:11 p.m.
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moved:
That:
(a) the House recognize that,
(i) Article 24 of the Convention on the Rights of Persons with Disabilities, which Canada signed in 2007 and ratified in 2010, states that signatories “shall ensure an inclusive education system at all levels and lifelong learning directed to enabling persons with disabilities to participate effectively in a free society”,
(ii) according to the Global Education Monitoring Report, in low- and middle-income countries, approximately 50% of children with disabilities are estimated to be out of school,
(iii) a 2021 UNICEF report found that, compared to children without disabilities, children with disabilities were 49% more likely to have never attended school; and
(b) in the opinion of the House, where the federal government spends money on education, domestically or internationally, clear consideration must be given to the maximum inclusion of people with disabilities, including people with intellectual and developmental disabilities.
He said: Mr. Speaker, it is an absolute pleasure to be here.
This is usually a place where we have very passionate debates about things that there are wide-ranging opinions on, and sometimes those debates can be hotter than at other times. I think that this time of year traditionally is a time when the temperature outside is hotter and maybe things in here get a little bit hotter as we are moving towards summer. However, my hope is that today we can have a conversation that is every bit as passionate as the ones we usually have in here, but where we are able to maybe find a little more common ground.
I will give a little bit of context. My daughter is 23 now, and she just finished her second year of law school. She was six when I got elected, so it has been a while. When she was 13, we did an interview with her brother Jaden, who has autism, when Jaden was 16. He is now 27 years old. When Jenae was 13 and Jaden was 16, we did an interview with Steve Paikin on The Agenda.
Steve knows me and my kids well, and he did not give Jenae a heads-up that he was going to ask her a really tough question. He just said, in the middle of the interview, to 13-year-old Jenae, “Jenae, I'm going to ask you a really tough question right now. Are you ready for it?” She said that she was, and she steeled herself. He asked, “Do you ever sometimes wish that your brother was ‘normal’ like every other kid?” Thirteen-year-old Jenae, without hesitation, responded, “Well, honestly, since Jaden was diagnosed with autism before I was born, I don't exactly know what a ‘normal’ brother is like, so Jaden kind of is my normal, having autism.”
Steve asked, “You like him just the way he is?” Jaden was just smiling there the entire time, looking at his sister, whom he loves deeply. Jenae answered, “If he didn't have autism anymore or was cured or something, he wouldn't be the same as Jaden is now.”
Obviously, Jenae, being three years younger than Jaden and growing up in the same house, has not known a life without Jaden, as she referenced, so her “normal” has always included Jaden, for her whole life. However, when I am speaking to students or groups around the world internationally, or whatever the case might be, I always use it as an opportunity to draw a connection to the school environment that they both grew up in.
They went to a kindergarten to grade 12 school, so they went to the same school for their entire basic education lives. Obviously, Jaden was a few years ahead of Jenae. Jaden was fully included in a regular classroom, and that was right from the time he started. He had a full-time aide working with him. His needs are such that it was really important for him to have that full-time aide. In some circumstances, it might work a little differently; the needs might be a little different, as every kid with a developmental or intellectual disability is in a different circumstance.
Because the school made the decision to include Jaden in that school, certainly his life was better, his educational experience was better, and he will be more prepared to participate and be able to contribute his skills and abilities because of having been included in that school. However, for every other student who went to that school with him, their normal included Jaden. Their normal included life with somebody who had autism, somebody with a developmental disability.
Surprisingly, when we talk to those students afterwards, to a person, they say that their life was better off because of that experience in school and getting a chance to work with Jaden. Their experience since they left school has also been better, when, for example, they come across somebody who thinks a little differently than they do, maybe not even with autism or a developmental disability, just somebody who thinks a little bit differently. We all know people we can think of when I say that. I guarantee that everybody can think of somebody in their life who thinks a little differently than they do. However, because Jaden had been included in a regular classroom, their lives were better, and they were better prepared to come out into the world.
The motion has some preamble that is really easy to skip by, but I will focus on just a couple of things in the preamble that I think are really important at a global level.
The second point in the preamble reads, “according to the Global Education Monitoring Report, in low- and middle-income countries, approximately 50% of children with disabilities are estimated to be out of school”. This is not about developmental disability or intellectual disability and being included in a different part of the school. They are out of school. Approximately 50% of children with disabilities are out of school.
Point (iii) in the preamble says:
(iii) a 2021 UNICEF report found that, compared to children without disabilities, children with disabilities were 49% more likely to have never attended school
We are not talking about them dropping out later in their teenage years or whatever the case is. We are saying that they were 49% more likely to have never attended school at all.
The action statement in the motion says:
(b) in the opinion of the House, where the federal government spends money on education, domestically or internationally, clear consideration must be given to the maximum inclusion of people with disabilities, including people with intellectual and developmental disabilities.
I am going to explain this a bit because that language is very deliberate.
First of all, regarding “where the federal government spends money on education”, in Canada, obviously we get into jurisdictional questions, and much of the funding for education domestically is provincial. However, the federal government does spend money on education. I think particularly of indigenous communities, for example. We have a lot of work to do there. What the motion says is that as we have those conversations, we need to consider people with disabilities, particularly people with intellectual and developmental disabilities.
I have had great conversations. We have some fantastic leaders in the disability community. I think of conversations I have had leading up to this point with Neil Belanger and Ken Robertson. We have an up-and-coming researcher in Alberta named Grant Bruno, who is doing some fantastic world-leading work on these issues. That is one important component.
Then the motion says, of course, “or internationally”. The federal government just contributed over $80 million to Education Cannot Wait, an international organization that does fantastic work in refugee camps, war zones and those kinds of places. It is an organization that I have had the chance to do a lot of work with. As we are pursuing that work and funding education, we want to make sure that people with disabilities are included.
The motion talks about “maximum inclusion”. I use the words “maximum inclusion” because we want to make sure we are having a conversation in which it is really easy to get into wordsmithing and to get into some important debates about what full inclusion looks like and what inclusion looks like broadly. My view is that whatever the level of inclusion we are at, we can do more. We can move to maximize what inclusion looks like.
In Jaden's case, he was included in a regular classroom, but some schools that do great work might have an interactions classroom, where there may be six, seven or eight kids with a developmental disability or an intellectual disability. They are in a separate classroom, maybe because their support needs are so significant. Those schools might be striving to include those kids as much as they can in field trips, lunch, recess, phys. ed., musical theatre or any kind of art program they have. We can imagine a world of opportunities, and ultimately, maybe the goal is to move them to a regular classroom with proper supports. That might be the goal there. “Maximum inclusion” is meant to allow anybody to get a vision for where they want to go with it, depending on their point of view and the work they are doing.
The motion then says, “people with disabilities, including people with intellectual and developmental disabilities.” It is really important that we have disability-inclusive education, but oftentimes many advocates in the world of developmental or intellectual disabilities say that even in inclusive education conversations, people with intellectual and developmental disabilities are excluded or are left behind. The language is designed to create a bridge so that we are working on both and are not leaving anyone behind in the conversation.
This motion comes at a really interesting moment. It is actually a really great moment, I think, for this motion. While it is a motion and some people might think a motion is non-binding or has a bit less action to it in a sense, I believe the opposite. I believe it allows us to have an important conversation on the floor of the House of Commons. We can vote on it as members of all parties and hopefully pass it, and then we can point to the motion as being a driving force or guide for us as we do the important work we do on education.
The timing is important because, in September, the UN General Assembly held the Transforming Education Summit, with a broad approach and countries coming together on the important issue of education, something that both the former Conservative government and the present Liberal government have supported. There was a specific note that came out of it called “A Call to Action to Ensure Inclusive and Equitable Quality Education”. That was at the UN General Assembly.
Coming up in June, there are the annual meetings on the Convention on the Rights of Persons with Disabilities. Those annual meetings will take place next month. Governments from both sides of the political spectrum have been supportive of the convention over the years, so that is an important opportunity. Then at the end of June, Special Olympics are happening in Berlin. Around Special Olympics, Tim Shriver, the chair of Special Olympics and the son of co-founder Eunice Kennedy Shriver, is putting together a global education summit, where they are going to talk about these very issues at a global level. This is a real opportunity for Canada to play a leadership role.
I do want to point out that, in the world of international development, there is a lot of conversation about the hardest to reach and leaving no one behind. These are important concepts in the world of international development, particularly in the education context. When we think about people who are vulnerable, we try to avoid some of the debates that we have, as we do not want to play one group against another group. However, one thing I would quickly remind folks of is that, as we work on, for example, education for people in refugee camps and war zones, those kids would be incredibly vulnerable if they are living in a refugee camp or a war zone, but any one of those vulnerable kids could, on top of their vulnerability, have a developmental, intellectual or physical disability, and then they would be even more vulnerable.
We talk about girls' education, and we rightly we talk about girls' education. There are tens of millions of girls who are not in school right now who should be. When we think about girls' education and the vulnerability around that, particularly in some parts of the world, we have to recognize that any one of those girls could also have a developmental, intellectual or physical disability, and then we have even more vulnerability.
As we build our systems, as we build the structures and the programs at an international level to tackle these issues, we need to make sure that we build those systems to reach that girl, maybe in rural Africa, who is 13 years old and dealing with maybe an early forced marriage, in some countries, and the stigma of having a disability on top of that. If we can reach that girl with an intellectual disability in rural Africa, we can reach every girl along the way. If we can reach a little boy in a refugee camp or a war zone, who is six years old with a disability, if we can wire our hearts and our systems to reach out, find that boy and make sure that boy is included in the education systems that we set up, we are going to reach everybody along the way as we are doing that.
I will finish with a story. I was in Tanzania about eight years ago, and I came across this group of teenage boys. They were intrigued by my iPad. I showed them a picture of my daughter and one of the boys said, “She's nice”, in Swahili, and I agreed. My daughter is very nice. Then I showed them a picture of Jaden, and I explained through the interpreter that he has autism and what he is like. The boys were riveted to my words as I was explaining what Jaden is like.
One of them, who had been quiet up to that point, looked me straight in the eye and said, again in Swahili, “I like him. He's beautiful. I'll pray for him.” This was unprompted. With just a bit of understanding, that 15-year-old boy's heart became attached in a very special way to another young person with autism half a world away from him.
This is the time for us to have this conversation. There is a world of impact we can have if we not only have the conversation, but then also activate that conversation. I look forward to the opportunity to hear members from all parties weigh in on the conversation.
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Madam Speaker, I am loving these questions from all sides. They are hitting the nail on the head. They indicate there is a real understanding of what needs to happen.
The “nothing about us without us” conversation is something that I think we continue to get better at, but we have a long way to go. It is a challenge. There is a segment of the autistic population that is able to clearly communicate what it is like to have autism. There are other people on the autism spectrum in Canada for whom it is a bit more difficult to communicate, but I think that we are all learning that we have a long way to go to include those voices.
I have one more quick comment on that. What is very important is that we make sure we are including indigenous Canadians with autism in that conversation as well, because I think they have been under-represented in many of the conversations over time.
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As members know, I do not speak with the authority of someone who has autism. I do not speak with the authority of a scientist and the folks who do unbelievable work, many of them right here in Canada, leading the world in the science around autism. I speak as a father of an incredible young man, very familiar to people this place, named Jaden, who was 10 years old when I was first elected, and last month he turned 27. He is an energetic young man who brightens up this place when he runs around giving people high-fives, as he is so happy and excited to meet folks.
I will probably share a little more from the heart, but I will start with the technical details and touch on what the bill would do.
As was mentioned in the introduction, this is a proposed act respecting a federal framework on autism spectrum disorder, and I am not going to get into every aspect of it. The bill is just over two pages long, French and English, so it is not super long. Importantly, it leads off with a statement that “The Minister of Health must develop a federal framework on autism spectrum disorder.” It then lays out the measures to be provided, which folks can take a look at on the Internet and see the bill there.
Its real strength, I think, is in its accountability mechanisms, and towards the end it talks about the minister. It says, “Within 18 months after the day on which this Act receives royal assent, the Minister of Health must cause to be tabled in both Houses of Parliament a report setting out the federal framework on autism spectrum disorder developed under section 2.”
Further to that, later on it says:
4 (1) Within five years after the day on which the report referred to in section 3 is tabled in Parliament, the Minister of Health must cause to be tabled in each House of Parliament a report that sets out
(a) the measures from the federal framework that have been implemented and their effectiveness in supporting autistic persons, their families and their caregivers; and
(b) with respect to any measure included in the federal framework that was not implemented, the reason it has not been implemented and the timeline for its implementation.
I think there is a really strong accountability framework.
For anybody who has been working in this area over the years, there is a real impatience right now. It has been many years that we have been talking about a national strategy. However, here we are today, and I think it is an opportunity to move forward, with some of that impatience, yes, but with real hope for the future for people with autism in this country and the people who care about people with autism.
My other hope is that, in addition to whatever strategy the government comes forward with, and there is indication that the government will be coming forward with a strategy maybe even ahead of the timeline outlined in this bill, it will be both substantial and organic. I think part of the problem over the years is that we have been waiting for perfection, waiting for every box to be checked. Therefore, we have had delay after delay. We have to recognize that we are never going to have unanimity, but there is a lot of common ground. If we work together towards that common ground, we will be able to make some progress. Then, through constant consultation with autistic Canadians, scientists and the broader community of families and caregivers, we can make whatever it is that we come up with stronger and stronger all the time.
I have a few thanks to give that are worth mentioning.
First, this bill did come from the Senate, where it was supported unanimously but largely led by Senator Housakos and Senator Boehm. I offer a huge thanks of appreciation to Senator Housakos and Senator Boehm. Also, I would be remiss if I did not thank Senator Jim Munson, now retired from the Senate, who led the charge on this for years and years.
I also want to thank colleagues from all sides of the House. I have been so fortunate over the years as we have worked on these things to have support from my own colleagues. As well, today, this bill is seconded by a Liberal colleague, whom I have had the chance to work with in his previous life when he was on the provincial side of things, more behind the scenes, trying to find some common ground when we could. My experience is that we have had so many people contributing in that way.
I thank everyone who has contributed to Jaden's life: his sister Jenae, his mom Debi, his grandmothers Helen and my mom Bonnie and her husband Dale, and all of the people who have surrounded him over the years.
I am going to turn to the second half of my speech, where that common ground, in my experience, lies. It is pretty straightforward. As we have conversations with people across the country and around the world, there are some really common areas where there is a lot of work that needs to be done and is critical to achieving the best outcomes for autistic people. That is diagnosis and early help. Some people say early intervention or early therapy, whatever it might be, but a good common ground word would be help for people. There is education, employment, housing. The sixth thing that is a little more vague but we all are concerned about is this idea of what happens when we, as parents, are gone. Are we going to have people around our loved ones who are going to care for them like we cared for them? That is a critical question.
Two of the things that I have kind of focused on or learned as I have gone down this path, both through my experience with Jaden and in talking to lots of other stakeholders, particularly autistic people themselves, are the ideas of inclusion and autonomy and what those things mean. If I think about autonomy for Jaden, it is a bit tricky because Jaden has real difficulty with abstract things like danger. Jaden could not have full autonomy because he might run into a street. He loves dogs. He might see a dog and run across the street to grab the dog by the side of its cheeks and pull its face into his face so he can smell the dog's breath, feel the dog licking his face and he would not even be aware of traffic as he is running. There are all sorts of danger awareness issues.
I like to think about maximum autonomy. With Jaden, when I think about maximum autonomy, I think about the fact that too often we are impatient, trying to figure out what he wants or presuming we know what he wants. We do not take the time to really listen to him. What I have learned over time and my advice to loved ones of people with autism is to really try to get down to their level, in a sense. We should not force them into our world, but get down in their world and really take the time to try to understand what they are trying to say.
When Jaden grabs my face and says, “Ba, ba, ba, ba, ba, ba” super intently, he is trying to tell me something, and it is incumbent on me, as someone who cares for him, to try to understand what he is trying to tell me. That may be through his body language, his facial expressions. Sometimes his skin tone is a little different. Sometimes he is paying attention to and looking at something that is bothering him, like we forgot to grab something that is important to him, such as his iPhone or something like that. He is always trying to communicate something. It is incumbent on us to try to find out what that is if we are going to maximize people's autonomy.
I will talk about inclusion. I talked about maximizing autonomy for Jaden, but we talk about inclusion as well. Full inclusion is a really tricky concept. Not every fully inclusive situation is perfect in every scenario for every single person, but that goes for us as well. There may be things that we do not prefer or ways that we prefer things to be that are not the same as everybody else wants.
As we look at inclusion, I think about inclusion in Jaden's case. Jaden was included in a regular classroom, but he was not included in the same way as every other kid by himself in that classroom. He had an assistant with him. It is a bit different, a modification to help him mitigate some of the challenges he had, but he was in a regular classroom from kindergarten to grade 12.
That regular classroom really served him well. He surprised a lot of people. He had kids around him who really saw what he was good at and because they paid attention to what he was good at, they had a chance to realize that oftentimes his abilities surprised them. They were beyond what they might have thought. They had a chance to get to know him because they were in his classroom, and they challenged him.
For him, that was being included in a musical theatre production in grade 10. He was first in a group scene in grade 10, but then he again outperformed expectations, so in grade 11 they gave him a few more scenes. They put him in some sort of dance routines and things like that and taught him to do those things.
Then in grade 12 they did another performance, and one of the girls in the class asked if Jaden could be her partner, her husband, in Joseph and the Amazing Technicolor Dreamcoat. She modified all of the routines to make it look like he was doing exactly what everyone else was doing. That is what inclusion looks like. That is what maximum inclusion looks like. It is people getting to know people and then challenging them. It is embracing their skills and abilities and helping them with their challenges, just like all of us need in this place.
We have so many people who are here to help us in that regard. Not all of us can draft perfect policies, so we have people working in the House of Commons who help us with that from time to time. There are all sorts of those things. We have translators who translate, because not all of us are perfectly bilingual. We are all challenged with something. For people with autism, it is no different from that.
I am going to close by telling a story I tell at the end of my presentations. I do presentations around the world about how we define normal.
About 10 years ago, we had a chance to do an interview. My daughter was 13 at the time and Jaden was about 17, and we had this chance to do an interview with Steve Paikin. Anyone who has done an interview with Steve Paikin, and there are a few of those people in this world, know he can ask some tough questions sometimes. He gave Jenae a heads-up that he would ask her a tough question in the interview, but he had not given her a heads-up as to what it was going to be. He asked her if she sometimes wished her brother was “normal”, like every other kid. He said, “quote, unquote”. He knows Jaden and he knows Jenae as we had done interviews with him before.
Jenae, without skipping a beat, at 13 years old said, “Well, honestly, since Jaden was diagnosed with autism before I was born, I don't exactly know what a normal brother is like, so Jaden kind of is my normal, having autism.” Steve pressed her and asked, “Do you like him just the way he is?” She responded, “Honestly, if Jaden didn't have autism or was, like, cured or something, he wouldn't be the same as Jaden is now.” At 13 years old, as a sister, she said that.
When I am talking to students and am talking about this in front of 500 introduction to psychology students, or whatever the case is, I will point out that in Jenae's case, she did not have a choice. She was born into the family and Jaden was already there, so her normal was kind of set out for her. However, the school they went to from K to 12 had a choice, and it chose to include Jaden in the classroom.
At the time, we thought that was better for Jaden, but every single kid he graduated with, every single kid who was in that school with him, would say their life was immeasurably better because Jaden was included in their class. They learned so much. When they move forward in their lives, the diversity of knowledge they have is so different.
I often like to think of my life and my normal and how we define it. It is almost like, and bear with me here, a video game character. Think of a video game character and imagine a circle as long as we can see, and that is our video game character, and we walk around and experience things in that bubble. Sometimes that is what our life is like. I am 53 years old. My life is like 53 years of walking around in that bubble. Sometimes a TV screen or a computer monitor comes into that world and shows me something from the outside, but that is my normal.
If that circle only included people just like me, first of all, my weaknesses would be the same as other people's weaknesses, so nobody would be there to compensate. Also, my strengths would not be strengths because everybody would have the same strengths. Our world, our normal, is better when we are surrounded by people who come from different backgrounds and who have different experiences. To the extent that we grasp that and include all Canadians in our experiences, our workplaces, housing, education systems and in everything else, we are all going to be better off for it.
I look forward to hopefully passing this bill and creating this better world for all Canadians.
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