A conversation with our founder, Alan Holdsworth
For the first installment of our Conversations series, we talk to the founder of Disability Equality in Education, Alan Holdsworth, about his background, his advocacy journey and the wisdom he brings to the table. This first conversation was held between Alan and one of our long-time board members and volunteers, Sharon.
Sharon:
So Alan, I would like to talk to you today about yourself and Disability Equality in Education and Disability Inclusive Curriculum. Can you first tell me a little bit about yourself and your childhood?
Alan:
Yeah. I come from a working class family, from England. My father died when I was 10, so I grew up with my mother and my granddad. Really, he became like my father figure until he died when I was in my early twenties. I was born in ‘52. So there was still rationing in England after the war, the second World War. But I grew up in the sixties generation. So I grew up with the Beatles and then I grew up with the hippies and I had my second childhood a little bit later on. And then I got into Punk Rock. I had a good childhood until the age of 10. The grammar school where I went to starting at 10 was notorious for bullying and I was one of the people who was bullied.
So I truanted from school and basically learned how to self teach. I used to skive off (skip school) and go to Manchester City Library, which is a beautiful building, and did most of my studying there. I was lucky enough to pass exams based on my own, you know, basically directed studying that I did myself.
My mother died when she was just over 50 in 1981 and I had just left home at that and got my first full time job as a community worker.
Sharon:
Can you tell me a bit about your background and why you were the one to come up with the concept of disability inclusive curriculum? It hadn't come up before. Why were you the one that ended up coming up with it?
Alan:
Well, to tell you about my background will take a while. But basically in the mid 80s, I started to meet disabled people who were coming up with the kind of thing we now call the social model of disability. In other words, looking at disability from a social perspective rather than the individual as a problem. And also I was connected at that time, as a youth and community worker.
So I was doing youth education, both in schools and outside of school. I was kind of learning how to design courses and have experiences. And at that time I was particularly interested in anti-racist practice. I had an educational background. I got an education degree and got to become a community worker. That went on for another 10 years in different places, not just London. And eventually I started working with disabled people. And once you begin to do that, once you begin to understand disability as a rights issue or as,discrimination and that where as disabled people are oppressed by the way in which society is constructed and organized, then you need to think about that in different ways.
Working with other disabled activists, one of the first things that we encountered, not the first, but almost the first, was the attitudinal oppression to the ITV Telethon. We had a demonstration called Block Telethon in 1991 and then two years later in 1993 and we closed it. (you can learn more about Block Telethon in this article as well as in a docu-drama on Netflix called “Then Barbara Met Alan”)
And all of that campaign was about challenging the negative stereotypes, images and language around disability. Telethon, similar to the Labor Day Musculuar Dystrophy Telethon in the US, focused on cures for people with impairments and paints them as being in need of pity and charity, when really all we want is to have barriers removed so we can be equal members of society. So that was my first kind of, foray if you like, into challenging the attitudes around disability with and through that Telethon, we began to shift disability from the health charity pages to the political pages.
All my life I continued wanting to change the perspective of how disabled people were viewed. And much later on, I saw that through the curriculum, that would be another way of attacking those images, stereotypes and attitudes which address disabled people. And so for me, it took a while to get around to that because we were doing all sorts of other campaigns, for instance, you know, getting people out of institutions, getting lifts on buses and getting schools to accommodate disabled people and adopt whole school policies.
But in the end we felt that if the social model which is talking about systematic, environmental and attitudinal discrimination, then the disability inclusive curriculum was a way to directly challenge and reeducate young people into not having those attitudes that systematically disable us.
Sharon:
How have the original goals or mission of the organization evolved since you first developed it? And are there any specific milestones or achievements that stand out to you?
Alan:
Officially, DEE started in 2009. But we really weren’t able to move forward on implementing the idea until we applied for and were awarded a grant from the PA Developmental Disability Council in 2017. It was jointly supported by three organizations which were part of the initial grant, which were Liberty Resources, the Pennsylvania Developmental Disabilities Council and Disabled in Action.
The first thing we had done was some research back in 2017. We wanted to make sure the curriculum covered all subjects, targets all students and is representative of all disabilities. Most of the curriculum we found around the country was tied to disability history and although very important, it’s not sufficient.
We also wanted to include, for instance, Social Emotional Learning and Character Development. I believe opening up conversations in the classroom throughout a student’s life would change attitudes and create better citizens.
In the beginning, we thought we could just go to the school district and say, “hey, guess what, we could write curriculum for you and, you know, come into your school and teach disability” and that we’d be welcomed with open arms.
We didn't quite get it right. One of the things we learned was that we have to have a product if you like and that turned into our website. We sort of moved things around in our planned timeline to make sure that we got the website up and running as soon as possible making sure that each lesson was formatted in a way that teachers are used to including standards, objectives, goals and so on. One of our consultants, a disabled teacher, taught us the importance of SWBAT (Students Will Be Able To) so that became standard in our lessons.
We knew this, but teachers had other things that were in their list of priorities. We had to think, we knew the interest was there, but knew that a thumbs up from the government and Department of Education would help move things along.
Under our grant, we weren’t able to lobby, but had no problem building and mobilizing a base of volunteers and key supporters to educate the public and legislators. Many of them provided crucial testimony in the two hearings along the way to get the bipartisan support that led to the passage of the Disability Inclusive Curriculum Pilot in July of 2022.
One of the big things that really happened was that we found a champion in Represenatative Joe Hohenstein who really “got it” and pushed it from the time he first heard about what we were doing. (We’ll be talking with him in a future Conversation)
Sometimes, bills die in the process, and ours did the first time around. I loved hearing how Joe recognized that to take this to the next level, he’d need a partner, another champion. He traveled to meet with the Chairman of the Subcommittee for Special Education under the Education Committee, Representative Jason Ortitay. One meeting across the state and across the aisle and he found that partner. And that's what Joe did. It became very much a bipartisan piece of legislation, but now led by the majority party. And eventually it got through. We learned a lot about the process of a bill becoming law over the last few years!
Now there is really is national attention to a disability inclusive curriculum, which probably there wasn't, you know, when we started out. But I do think what we’re doing here in Pennsylvania is applicable throughout the country in its own way. I don't think I would want to campaign for an imposed disability curriculum but I think we could win a sustainable and sustained national resource for teachers so that they can teach the disability inclusive curriculum.
I don't think we can ever make them do it. I sort of wish they could, but I don't think we really would want to because that would open up the whole kind of worms if you like, So, I move away from that idea, but to create a national resource for teachers, educators, which you can take into the classroom and have conversations. That thing is both bi-partisan and is achievable.
Sharon:
Thanks. Now onto something not really school related. Tell me about your favorite song. Maybe one that you've written as well as one that is not by you. I know that's hard.
Alan:
My favorite song that I wrote is, “I Don't Want to be a Wannabe”. It's not one of the most well known ones. It's not one of the anthems, but it is, I think the one is closest to me as a person. It’s a confessional in a way.
One that I haven't written is a lot harder so I’ll cheat and pick 3. Anthem by Leonard Cohen, Imagine by John Lennnon and London Calling by the Clash.
This can change everyday!
Sharon:
What are you passionate about?
Alan:
As an educator I am passionate about teaching and working with people and watching them grow even though sometimes they are not aware of the growth themselves. Obviously I am passionate about Disability Rights particularly because I owe it to the pioneers who taught me.
Sharon:
Tell me about your favorite teacher.
Alan:
Oh, my. Ok. Alright. This is a lovely story actually. I guess my favorite teacher throughout my whole K to 12, you know, education was in my, what would it be over here? Well, I was in my last year of elementary school aged 10 before I went to grammar school and her name was Mrs Perrot, not Mrs Parrot, Mrs Perrot! And she was just a young teacher who was committed to educating everyone. You know… I was kind of quite a naughty boy when I was growing up.
I was always in trouble. I was always, we had a wall where the naughty boys had to stand in play time rather than play. And I was standing on that wall so many times, but in the classroom, Mrs. Perrot was really, really, a great teacher. She had a charisma which made you want to work for her, She rarely, if ever, had to be strict. A sad smile was enough!
Only two students actually qualified to go to grammar school and everybody was totally surprised that I was one of them except Miss Perrot. I mean, the head boy didn't get to grammar school, but this naughty guy, did, Wow! So Mrs. Perrot got me into grammar school.
And the beautiful thing about it was I actually wrote something on Facebook about six months ago about Mrs Perrot. And next thing I know is her daughter is on Facebook and saw it. I said, “Oh, my mom is still alive”. And I went, what? Wow. You know, so there's Mrs Perrot. She must be 90 something and I had a talk with her and she remembered me! And that was just an amazing thing. Thank God for Facebook.
Sharon:
That's very cool. Is there anything else that you would like to tell us about that I haven't covered?
Alan:
Well, I think if you say, well, what influenced me in my life, the bullying I had in secondary school and I must admit this secondary school is called Stand Grammar.
And if you go online, you can see a Facebook page called “Stand Grammar School alas no more”. But on that page, you will see other stories, horrible stories of child abuse that went on at that school, not just bullying by students, but the teachers were also sadistic bullies. I mean, I can remember corporal punishment was still very much the rule and very much the norm of that grammar school.
And so with that experience of being the victim, if you like, of being bullied, has left, you know, has remained with me throughout my life. Not a victim, but I really want to stop it. I really want to play a part in ending any of that, right? And learning, remembering some of the practices that were key as education back then. I think for teachers now they really need to understand what an inclusive culture is like and how those practices have to be about investing in things like anti-bullying and so on. So that's why, you know, when I think about why I do this? … That's why I do it, because I was bullied. I didn't get the education I could have had because of the way in which that school organized, tolerated and allowed really bad practice to continue and flourish and be celebrated.
Sharon:
Thank you so much for sharing your time with me today and for starting this important movement, this shift in how disability is understood in schools.