Tomorrow Is Too Long to Wait for Inclusion

My Life with Autism: A Speech by Jordan White

jordan white; young white male wearing glasses sitting in front of a computer with the Kennesaw State University logo on it


My Life with Autism – A Speech by Jordan White… by sampsoninc916

A friend of mine spoke to our school staff (Kincaid Elementary School – Marietta, GA) about his life with autism and being included in general education during Exceptional Children Week. This video was from April 2011. The complete transcript is provided below.

Since the publication of this video, Jordan has graduated from Kennesaw State University (KSU) with a degree in computer science and is currently employed in the field of technology. You can read more about Jordan from the article “No Boundaries” published on the KSU website.

My Life with Autism – A Speech by Jordan White and Family

Tim: I just want to echo what Jodie said, yesterday was awesome the assembly was mind blowing so that was really, really a special time. Today we have Jordan along with David and Patty White they are our special quest David is friend of mine and we just started talking on day about Jordan and I was like I really want our staff to hear his story. So I thought the best kind of way first of all I want Jordan to know our staff is super nice and they’re going to smile and they are going to be completely attentive to what you are about to say you know so no worries we are all friends here. And also how I wanted to set it up I kind of thought David and Patty can kind of ask Jordan some questions his experience growing up in Cobb County schools kind of his journey towards where he is now Tennessee State University and so we’ll kind of start with that and if I feel like you know I want to add some questions I can and then if we have time we’ll open up for questions for everyone else. So why don’t David and Patty why don’t you, you know the beginning I suppose.

Patty: Introduce yourself Jordan.

Jordan: Hello

Audience: Hi

Jordan: My name is Jordan White Noel White and I was born on September 16th 1991 in Orlando Florida and I was born autistic, when my parents had me they never really knew I was autistic until I turned 3 or 2 years old and the doctors soon found out I was autistic and had trouble learning to speak learn how to socialise learning as well as learning how to be the best I could possibly be and kind of way for me no one exactly no one really understood autism and then again no one understands it today. So that’s the best choice for them to put me in a place where in a place where regular students that if I learned how to be like regular students I might be able to have a chance to succeed so they put me in a preschool and I choked and so this include dong other activities other students did, yeah I sometimes had problems in that class like the fact that I really wanted to make precision cuts on photographs making trying to write that well sometimes even my dad would come into the class room and show me some pictures so I could identify them and he actually, my mom and dad too their time to get a bunch of therapists to really help me learn so I would be prepared for the next step in the school and I think there was flash cards lean how to there was an audio test where I had to listen to a tape and stuff and I pointed to this what the sound sounds like where the sound came from  and it kind of evolve in those days we lived in  Alabama Henson, Alabama and so how for some reason we decided to move to a different city in Alabama so we moved to Huntsville. In Huntsville I chose a school well mom and dad chose a school, they chose a school the Tower of Light school. One time in one of those classes I looked at a year book and found that the school was built in the 50’s and I had no connect with that era so anyway they took they gave me classes to go to and basically it’s not like periods but like 1st period, 2nd period, 3rd period that school what we had was one class and sometimes you would walk in a line or go to another class which taught specific subjects and they would dismiss me from dismiss me at 5:30 and we would kind of walk in line and we would go out to the parking lot, the carpool where mom was waiting. Well my first classroom from kindergarten was with Miss Pool and she was sort of realized that I was autistic so the best thing she could possible do was to take some advice from my parents and they worked out some and I think they must have worked out a period of system where I a green light for good behaviour and red light for bad behaviour and basically if I was in the green light zone then I might be able to actually be improving, if I was in the red light zone maybe bad behaviour.

Patty: Can I stop you on second for a minute? So Jordan has gotten to kindergarten and he was diagnosed at 3. We started pouring all of our resources into therapies, speech, occupational therapy everything because it’s our impression with autism if you don’t teach them how to speak and they didn’t learn how to interact by the time they were 5 or 6 you know their brain started changing the way it formed and such so we really poured a lot into that and it made a huge difference. When he was 4 he started talking and I was going to conventions all over the place trying to learn about autism because it was kind of new 20years ago not nearly as common and well understood as it is today. He ended up going into regular included classrooms at kindergarten he had already taught himself how to read, recite his alphabet, read all his patterns and all his colours with puzzles he went crazy. But his IQ test 79 I think he didn’t test well or communicate or anything but he was brilliant and they recognized that there was great potential so they did go ahead and let him be fully included, he was pulled out to resource or special ED or (unclear 8:42) for social skills, speech training and facial training but academically he was always included because he did really well with all of that part. He was like the first student who had gone through who was included for academics and pulled out for other stuff which kind of the opposite of what normally happens but he was fully included as a kinder garner and started doing great. But it was difficult for the teacher in a lot of ways the team worked between the parents, the resource director, special authority there and the kid creating systems that we understood normally worked you know that communication, interaction was huge in making it successful and bring home what they were doing and reinforce it. I think is one of the things that was such a huge success between the parents and the teachers willing to try what we suggested because we knew our kid better than anybody else and we had been working with him for years and kind of had ideas what helped him as far as motivate him. If they listened to what we would say it would make their lives a lot easier and helped him to be so successful, we kept that partnership going even now he at Tennessee State and my husband is an adjunct professor and he communicated with the professors so that if there is questions or how do we tell him something or you know discuss with him they even now they’ll discuss it really patiently for the success for the kid. I think it helped Jordan that his parents were on board with it, we were not in denial in any way and we were going to fix this problem our mind set primarily was that he lives in a regular world and he’s got to interact with that regular world and it’s not going to modify for him necessarily so we do as much as we can to teach him to be who he is in that world. Because he’s going to live in it and hopefully be independent and successful in that world so we want to modify what we can and what’s reasonable but we also want him to have to modify and adjust to the world that he was placed in so

David: Let me ask you a quick question about elementary school. Do you remember anybody who was special in elementary school?

Jordan: Of course I do, in 2nd grade there were 2 girls who (unclear 11:13)and Melissa but most of the time I most of the time there was this kid named Hogan not to be mistaken with Hulk Hogan but he was a sort of a big one I must say. Well what happened was he actually was there for me he seemed to be somewhat like my protector in there like he kind of protected me from bullying. I never had one bully in all my life I was pretty amazed because I never understood why a bully represented the media.

David: Who was your favourite teacher in elementary school do you remember ant name now?

Jordan: Well

David: Was it Miss Brannon

Jordan: I love Miss Brannon she was a wonderful woman she was the resource director. She let me do many things in that class, well she kind of taught me stuff about my body and how to manage it and al well as curtsied and stuff and I was allowed to talk about my interest and she helped me a bit with learning some words and stuff so basically she let me play a few games involving teachings of words and maths so I may be able to understand better about words. There was this word game where I had to collect stuff a slide scroll if you know those from video game history and there is this one game involving me as a train and the limit was 999 basically a numbers train and you press number and it would just go to that place that’s on the train track.

Patty: Jordon has always been good with numbers and one of our discipline system even when he was in 2nd, 1st, 2nd, 3rd grade was for him to collects points and when he got so many points he would get to go buy one of him favourite Thomas Tank characters or something like that he would keep up with them in his head so he and he could always tell exactly and  it was like a 100 points system not just you know a few points but he would know when it was 72 he always knew how many gains or loss that’s 2 points we take it away if you are not going to settle down right now. And because he’s black and white honest, it’s right or it’s wrong and he approaches the world that way he couldn’t lie about whether he loss points or not. It worked because he would have to be honest just because that’s what autism is. Its’ what it is just yes or its no, it’s black or its white; it’s not that grey area. The resource teacher was very good at using his strengths playing to those playing to his interests in trying to create the motivating system that they used and that was huge and using peers like he said his friends. They always try to sit him by in every classroom he always has one or two little nurturing girls that want to help or want to mother somebody and that’s where Jordan would be sitting and they love him to death and keep him on track whatever. There is always some friends like that abound you (crosstalk-well yeah) even in high school he had those friends..

David: That’s even gone all the way up to high school and Tennessee State as well students have always kind of taken to Jordan they understand that he’s in class he trying, he’s working really hard and

Patty: They usually respect his intelligence and always he’s going to help them and if he’s on their team they are going to get all the answers right then they just work with him, work with him and the teacher has spun it as a positive thing and put that emphasis on the child and the student in the room take it that way and they learn from the situation and they grow learning how to deal with this person who is different from them. And the rate autism is growing in our society one out of hundred and ten I think it is now boys for sure, they are going to have to deal with a lot of them and they are smart like Jordan the ones that are going to come along and they are all starting to come to college and this first big wave they are going to get degrees they are going to be out in the world place with these kids and they need to know how  to interact with then if they had them all through elementary school they would be much better people when they get to young adulthood.

David: So at this point Jordan graduated with honours from (unclear16:46) high school so he still has a scholarship due (crosstalk-yeah) and what did you graduate in?

Jordan: Computer Science and class one and two film unit one and two basically

David: Go ahead tell them about you’re characters in your film.

Patty: This involves movies, movies trivia, producer, actors all their names, what dates they came out

Jordan: Well what happens is that you know while I was making movies I was trying to add characters of my own I mean comparing with doing dumb stuff on YouTube I was trying to actually tell a story. Basically there were certain characters that I wanted to use to tell that story and help that story along of course I wasn’t exactly go at first but then I always jump at the top and every film I made I tried to improve and basically I’m at the point where I can direct character by a certain motivation actually to be the best he can be to. Basically there’s one character of mine Samson who looks a lot like me and

Patty: When Jordon was about seven we felt that he was getting too focused on TV and stuff so we cancelled TV in our house so he wasn’t, he has 2 brothers and sisters and of course they were all divested but we cancelled the TV and his way of kind of dealing with it was to start creating his own shows and characters (crosstalk-universe) his own universe basically where we were all in. Not that he retreated into it but he played with it and he drew it on paper and he would have pages he’d flip through and in his mind it was like different screens he was looking at, it was just really fascinating. But he kept those characters added to them and made (unclear 19:12) maybe he would create them on Popsicle sticks and move them around and take pictures of them and edit movies and he just started his second, what is your paper you just did?

Jordon: The farm project

Patty: Yeah or his English composition class he had the choice of doing it as a multimedia or a written paper and he is extremely good with sentence structure and his spelling and grammar is excellent. But he chose multimedia so he just made a little movie where he pulled in movie clips and all kinds of stuff

Jordon: I give credit to those people who almost believed because they would come up as honest

Patty: And that’s the right thing to do give credit for the work, give them credit for it

Jordon: And well

Patty: Just a second

Presenter: So Jordon this is for earlier, what did you find as you got older Jordon and you started going into middle school and high school was there any point where it became really hard to be in regular you know regular classes? Like did it get harder as you got older?

Jordon: Yes it did basically I was a bit stressed out by the fact that I was getting a little more look than usual and the fact analyse literature and I also had to write essay that point to the person specifications about, I’m not exactly that I don’t know if I’m actually good at writing essays I wish I am but I don’t. I’m good at stories and personal I remember those times.

Patty: He wants to write what he wants to write always.

David: we had a little, little problem in 10th grade he was in private school and we had some anger issues about being too good with the computer and so he ended up missing a lot of school and cancelled them out the first test that you took and I believe your history class (unclear 21:36) remember and you sat together with people who were watching over you and he twelve students, here’s the best grade

Patty: Jordon had the top grade in (unclear 21:50) class. Jordon he went to public school starting in 3k with the 3 year old class room, he was put in a room with a couple of fairly profound kids when he was 3 and we lived in Florida.  And we moved to Alabama and they wanted to do it again to be in a room with all ages of kids you know lining up pencils not that that’s bad but it was a vast array of ages they were teaching some over here to use washing machines and they had little four old Jordon you know in the same room. So we were not pleased with that so we put him in our church preschool and provided an aid to be him so that, that would be manageable and actually the public school would pay for half of it because we kind of pushed that issue some. So he did that and he started regular kindergarten with public school too at the end of 4th grade when we moved to this town from small Alabama to big city and these great big school with so many people this school seems to me to feel very much like the little school he was in was a neighbourhood school in a town but being on a smaller scale. There were 3 of each grade instead of probably 10 you know having. You know some of these schools around here are so huge but we were just not comfortable with him going right in at the middle of the year and we started home schooling and he stayed home and he being the you know the right and wrong kind of guy he is I would just give him a list and he would just check, the perfect home school student

David: (Unclear23:21) ten fifteen

Patty: Yeah but he knew he wasn’t getting his social interaction and I wasn’t trained in special Ed or anything so we knew he needed to be with kids and be forced to be regular in the world and not that home school aren’t but they are isolated and his biggest need is social skills and so that’s why we had to have that and my other son was at North Park Christian at the time so we talked to them and they were willing to give it a try probationary from one year to the next and he stayed through to the middle of10th grade that’s when he came to (unclear 23:56) and that was a fabulous move the best we were kind of afraid to do it because still a little bit sheltered about it but it was a fabulous experience and excellent support and that was the first time he had ever had peer coach and when he was in high school public school they provided the peer coach. Because he was in advance classes they were pushing the limits with all the other students and he could do the work but behaviourally he was sometimes distracting and so then he was beginning to get up and walk the halls and they couldn’t just let him do that without an aid and you know some of those kind of things and to reach over and give him the stress ball to squeeze or whatever needed to happen

David: So he was so on one hand he was (unclear 24:37) and on one hand he was (unclear 24:38) a real difficult thing for a (unclear 24:42) because that’s rare to have that combination so they worked greatly with us and I can’t say enough about (unclear 24:51) they did a great job with Jordan and Tennessee State has been incredible with their flexibility the special services they have they get it. The wave of autistic kids coming through it’s not going to stop and it’s going to benefit the normal kids because they are going to manage kids like this someday. Microsoft they are already starting autistics to do coding some of these bigger companies understand where their strength are so  you’re likely going to managing them in the future and they will be in your communities as well.

Jordan: Please I sort of feel that I’m been sort of speaking too much

Patty: Maybe they want to ask you some questions.

Jordan: Okay, you can ask me some questions, oh yeah.

Audience: Jordan when did you know that you had autism?

Jordan: Well I think my parents told me.

David: But when did you realize it Jordan?

Jordan: I think I must, I think I was about maybe 99 or 2000

Patty: How old were you?

Jordan: About eight or nine.

Audience: Did that change things for you?

Jordan: A little I think but what happened was I seemed to try to understand it, yeah it might have changed things a bit.

Patty: I don’t think he really spoke it and said I’m having trouble with this I’m autistic and so that’s why I’m having a difficult time with till I would say the last 2 years. He didn’t start using that as an explanation for other people to understand why he was stressed out at that moment or anything like that. But it’s been very helpful for people around him and we felt from the beginning that it was very helpful to in every situation he’s been in to for all the people around to understand what was going on so when he’d show up at a church or show up a birthday party to say you know it must have been (unclear 27:22). He didn’t have a lot of friends because it was awkward but to go in and say Jordan is autistic and it’s a positive thing because of that he can do this and he can do that and this is wonderful but I don’t even know this and that and the other and we are wide open to chatting about it you know it’s an open door situation but it helps you to know and almost every time he’d start in a class and a couple days into the new year or new situation we would you know go out and have a special airing for Jordan while the teacher would explain to the other students with our permission so that they understood too you know I just felt that was always best for him and for all the people involved to understand what was going on. But yeah I think you started talking about it recently, say mom how much.

Jordan: Of course

Audience: Can you tell us what when you were in school what was the hardest thing for you and what was the easiest thing for you?

Jordan: Well when I went to school?

Audience: Yes

Jordan:  Okay well one of the hardest things for me when I went to school was trying to dealt with some of the extreme social situations, the you know crazy stuff happening and the also the changes in the schedule heck the lunch time was sometimes noisy. The one about changing the schedule I might have freaked out so other things that was hard was sometimes getting frustrated about doing things right and things not going my way. Of course one time I lunch wasn’t what I want so I kind of took that lunch sheet and crossed out the (unclear 29:51) and changed it to (crosstalk-the easiest?)Maybe the easiest thing was the good times like when I actually did stuff that I knew I could do and actually improving on my skills and hanging out with these people who loved me and they were trying their best to take care of me as well as and show me which like possible do to make things to keep me satisfied and on field day. Field day was kind of a good day because I would be getting some good treats especially (unclear 31:09) yeah some popcorn and pizza

Patty: He loves to eat, didn’t always love to eat very, very picky with his food from a young child and then I guess from around 4 or 5 years old we started deciding he could live off of hamburgers and chicken nuggets for the rest of his life and had to force entry of new foods and we picked things that was common in life as opposed to what would be good for him because we wanted a successful better kid so we picked pizza, we picked hot dogs we picked stuff that would be in a social situation he would need to be able to eat spaghetti whatever would be served mostly likely when he was out in public and try to teach him how to learn to eat all that stuff  and  he (unclear 32:03)

David: So Jordan it’s all most time to get going so tell them thank you.

Jordan: Well thank you for having me and I wish you in your education and I also thank you for helping to improve this world for people like me and making sure that these kids do their absolute best in the future.

Tim: Just one more minute before everyone leaves behind where Gail where Sidney sits is a bookcase and on that bookcase are books about exceptional children, gifted kids, kids with autism and we have the  Temple Grandin movie it’s like your own blockbuster script it’s great. There are a lot of movies and I try to buy movies that are applicable you know to our kids but they are just really good so if you haven’t seen it please check it out it’s there for us and the parents. There is also a movies called Including Samuel it’s a documentary about a film maker who son has cerebral palsy among things and they live in New Hampshire and him being fully involved in general education he is 4 or 5 years old in this film. There are a couple of books, Why Bright Kids Get Poor Grades, Being Smart About Gifted Children, there are probably almost half the books that are over there about gifted education because we don’t want to forget about our target kids and also Quick Guide To Inclusion this is a new book just really simple one kind of page ideas of how to make inclusion work in our schools in special grade. So you know we’ve got the bulletin board over there on the other side I’ve seen some people posting stuff and really excited about that, we have the resource library these things are here for all of us to take advantage so we can you know I mean Kincaid is just an awesome place already but I want to make sure everyone feels equipped and you know ready to take the challenge on for helping our kids and doing the best we can, right Jordan?

Jordan: Yeah

Tim: Alright so I think that all I have so

Forum Facilitator: I’d like to thank let’s give a round of applause so thank you for coming in and talking to our staff and thank you Tim for taking the time to organizing it. It was very motivating and at this time we are finished adjourned and don’t forget we have some cookies over here that Tim brought for us.

End of Transcript

Photo Credit: KSU

 

Disabled and Loved by God in an Ableist World

A version of this article was originally published at Jenn & Greg’s Quaking Life.

I grew up with a lot of confusion surrounding my sexuality and my disability.  Now, I can see how my perspective on sexuality was influenced by an ableist world, and where that confusion intertwined with my spiritual journey. As a campus minister, I find that I cannot talk about one journey without the other.

I can remember crying at night when I was probably eight or nine. I asked my mother, why me? What did I do wrong? Why did God do this to me?  I wanted to know what I did to deserve a speech impediment.  I didn’t feel whole.

I have always had a difficult relationship with God. For a long time, I tried to disassociate myself from Christianity. Growing up on the northern edge of the Bible Belt, I heard a lot of talk about God, Christ, and perfection, as if perfection were the third part of the Trinity instead of the Holy Spirit. I often wondered why I should follow a God who cursed me with a disability.

As a kid, I treated my speech impediment as something other than a part of my whole self. I saw it as a detriment that would keep me from succeeding. This thinking was partially due to a misdiagnosis early in life. Throughout elementary school, doctors predicted that I would grow out of my speech impediment by high school.

I could not wait until high school.

Around the same time, I saw a Full House episode where two teenage girls, DJ and Kimmy, were talking about one of Kimmy’s cousins, Steve, coming back to visit.  Steve was supposed to be nerdy-looking, or as Kimmy called him, a “geek-burger with cheese,” with glasses, braces, and acne.

kirk-cameron

Isn’t he a hottie?

Yet, when they opened the door, he had no glasses, nice teeth, and clear skin. The two girls were shocked that he was hot. (The actor playing the cousin was Kirk Cameron, who was considered to be one of the more attractive young male actors in the late 1980s.)

The girls asked what happened to him. He explained that he now had contacts, the braces came off, and the acne cleared up.

For years afterward, when I thought of the scene, I remembered it incorrectly. In my mind, Steve said, “One morning I woke up, and… bam!  The acne was gone.”

It stuck in my mind that way, so I used to dream that one day I would awake and find that my speech impediment was totally gone, like Kirk Cameron’s acne.

I wished and wished for that day to come!  Then, I would be more accepted and girls would finally find me attractive.

But that day never came. I felt disappointed as high school went by and my speech impediment hung around, like unwanted acne.

I spent a lot of my teenage years and my twenties feeling alone and just wanting to be loved. Even though I had a loving family and a huge network of friends, I thought I needed romantic love to feel complete. But for the most part, I didn’t have great luck with dating in college or the few years after I graduated.

It was four years ago when I met my now-wife, Jenn.  But even though I found the romance I’d been seeking all that time, I quickly realized that, nope, romantic relationships were not the magical cure to my deep self-hatred. I still didn’t feel whole.

Though I had always resisted, I felt God calling me to ministry in different ways throughout my life.  After college, I felt a more specific call to go to seminary, and though I avoided it for some years, I finally caved in and applied.  Just after I started dating Jenn, I enrolled at Princeton Theological Seminary in New Jersey.

Throughout my time in seminary, I wrestled with my anger toward God.  I wanted to know why God chose to give me a disability, or at least why He did not prevent it.  At one point, I started to view my disability as a gift—it was an attempt to quickly reconcile my anger with God with my calling to ministry in his name. But one of my field education supervisors called me out on that kind of messed-up theology.

That left me, once again, at a loss for how to reconcile my anger with God, and I realized it would be a difficult path to make sense of it.

In my last semester of seminary, I took a course called Sexuality and the Christian Body.  Finally, I came to understand that my disability was not a gift… it felt more like a burden.  But I also learned that I wasn’t as alone as I once thought. Through the class, I dealt with my anger toward God about my disability, and I actually confronted my feelings of loneliness and abandonment by God.

I read Disabled God by Nancy Eisland for my final class paper, and I realized that the Savior I worship was differently-abled, too.  Eisland writes, “The disabled God repudiates the conception of disability as a consequence of individual sin… Our bodies… are not artifacts of sin, original or otherwise. Our bodies participate in the imago Dei, not in spite of our impairments and contingencies, but through them.”

In the Gospel of John, there is a scene after the Crucifixion and Resurrection. Except for Thomas, all of the apostles had already encountered Him. But Thomas didn’t believe the others—he said that he would only believe once he saw Jesus with his own eyes and touched the wounds Jesus had sustained on the cross.

The Incredulity of Saint Thomas (Caravaggio)

The Incredulity of Saint Thomas (Caravaggio)

Jesus appeared to Thomas and allowed him to touch His wounds. This scene is known as Doubting Thomas, and this story is most often used to preach about the virtues of believing without seeing.

Yet, rereading this story through the lens of Eisland’s book, I see the scene in a completely different way. I realized my conception of a perfect God, a perfect Jesus, was false. Christ could have come back perfect—but He didn’t. Instead, He bore the wounds He had suffered up on the Cross. He came back differently-abled.

My disability is not a hindrance to the Kingdom of God but a part of my whole being, created by God. I am indeed made in the image of God, as it is written in Genesis 1.

For years, I let an ableist world and its standard of perfection define my sexuality and my spirituality… but not anymore. My disability is not like Kirk Cameron’s acne. My speech impediment is part of me, not an unwanted inconvenience that will clear up one day.

I am disabled, and both God and Jenn love me, just as I am!

Photo Credit: By Dante Alighieri at en.wikipedia [Public domain or Public domain], from Wikimedia Commons

greg-woodsGreg Woods works in campus ministry and lives in Greensboro, NC with his wife Jenn and cat Tuesday. Greg and Jenn blog at gregnjenn.wordpress.com. You can follow Greg on Twitter @diygreg.

The Right To Live In The Community, Not In Institutions: A Speech By Jill Weiss

Vancouver, BC

Although this post is specifically about Vancouver, the larger conversation about institutional versus community living is very apropos. Read on…

“The City of Vancouver presented the 2013 Access and Inclusion and Cultural Harmony Awards [on November 21st, 2013] to celebrate the achievements of outstanding individuals and organizations. The Access and Inclusion Awards recognize individuals and organizations that demonstrate leadership and commitment to eliminating barriers for people with any type of disability.

Jill Weiss, a long-time disability advocate and chair of the City’s Persons with Disabilities Advisory Committee, received the award for her tireless efforts and commitment to improving the lives of people with a wide range of disabilities. Her work has supported individuals with mental health issues, developmental disabilities, seniors, Aboriginal people, and those who have been marginalized, victimized, and neglected.” – City of Vancouver Website

The following is the full text from the speech that Jill Weiss gave after accepting her award. This was originally shared by Paul Caune.

I ask you to read, forward to you contacts and to act on her very moving acceptance speech–especially those of you who work for the Vancouver Coastal & Fraser Health Authorities & the people of Vancouver:

“I would like to share this award with Vancouver City Council. There’s been a real change in Council: we’re seeing a real understanding by Council of the civil and human rights of people with disabilities and a real commitment to the equality of people with disabilities in Vancouver. And that’s made a real difference – we have the first adaptable housing bylaw in Canada, which means that everyone, regardless of their age or disability, will be able to live in housing in our city, and for the first time in our city’s history, equality of persons with disabilities is a guiding principle in the city’s Transportation Plan.

This deep and real understanding and commitment by Council to the equality of citizens with disabilities will make a difference to thousands of people for years and years.

But there is one important area where I think understanding is not complete.

This is the year of reconciliation for the city, and I have seen deep and real understanding of the pain and damage of discrimination, and a strong desire and commitment to ensure it does not happen again.

But it is happening again, and no-one seems to be noticing.

If someone had a twenty or thirty acre parcel of land that they wanted to gift to the city, and a condition of their gift was that an institution for aboriginal people would be built on the land, it wouldn’t even be discussed. Council would turn down the offer without any discussion because we understand that what happened to aboriginal people was deeply wrong, and we would not do it again.

But we are doing it again for people with disabilities. Vancouver Coastal Health has a 25 acre site and they want to build an institution for people with disabilities on that site – why are we even discussing this? Why is the incarceration of people with disabilities considered acceptable?

In this year of reconciliation, we’ve heard deeply moving stories of the pain and damage to aboriginal people, to Japanese/Canadians, to persons of Chinese ancestry, to Jewish people.

But where are our stories? Where are our voices of what happens to us when we are deprived of our liberty just because we need help. When will you hear our pain and our damage?

The United Nations has an international Convention on the Rights of Persons with Disabilities which clearly states that persons with disabilities have the right to live in the community, not in institutions. That we have the right to live in the community with the same range of choices as other people, and the right to have the services we need provided in the community without isolation and without segregation. This right applies to all people with disabilities – no matter how severe our disability is, no matter how much help we need, no matter if we’re able to speak or not.

The UN Convention on the Rights of Persons with Disabilities was signed by Canada and British Columbia consented to it.

It is crucial that Vancouver City Council abide by the UN Convention on the Rights of Persons with Disabilities and ensure that we are able to live in the community like everyone else.

We have not committed any crime. We have the right to live in the community like our peers, like our families, like you and the person sitting next to you.

Please hear our stories of pain, of isolation and of segregation. Please ensure it does not happen again here.

I was in a car accident when I was twenty-five years old. I was a dancer, athletic, musician. I lost everything.

For almost ten years I lived in a bed without help. The anaphylactic allergies I have now are from lying in a mouldy bed for years and years and eating the same food over and over because I couldn’t get up & there was no help

I know what happens to people with disabilities living without help because I lived it.

What happened to me is still happening to people with disabilities in this city every day.

I have a fire in my belly – & the fire in my belly comes from the knowledge of what happened to me, and my desire to make sure it doesn’t happen to anyone else

For me, the tragedy of my life has been replaced by the good that has come out of it and the fuel for my work comes from the deep knowledge of how all of us with disabilities struggle to have a life every day.

I can’t change what happened to me – I can’t change the years I lost, but I can & will change it for others

And so can you.

And that’s the challenge I leave you with.

I think most of us in this room have an image in our hearts of a different world – a world of fairness, of equality, of people connected to each other & the earth, a world where the color of your skin or your ability to move your arms & legs makes no difference –

And I just want to say that that world in our hearts — we can make that happen.

I urge all of you to reach deep into your heart and work for the world you really want.

Then this award will have the most meaning for me.”

JILL WEISS, her acceptance speech upon receiving the City of Vancouver’s 2013 Access & Inclusion Award

What do you think about what Jill has to say? Are you having the same types of discussion in your neck of the woods? Please comment below!

Photo Credit: Mau.D.

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