Episode Transcript
[00:00:06] Speaker A: Welcome to Disability Empowerment now season four.
I'm your host, Keith Megancini. Today I'm talking to Sean Deneen, a professor with a disability.
John, welcome to the show.
[00:00:36] Speaker B: Thank you. It's my pleasure.
[00:00:38] Speaker A: So we were talking before and we've never actually met, but we've known each other for several years via social media. I believe we met in fates group of people who have cerebral palsy.
[00:01:01] Speaker B: Yes, that's right.
[00:01:02] Speaker A: We met there. So tell me, what, what empowered you to get your PhD and become a professor? And what do you teach?
[00:01:22] Speaker B: Well, I teach various types of history for Kean University in New Jersey.
Growing up as I did, academics became a refuge. My mother was a psych nurse. I was raised by her, my grandparents. My grandmother was an elementary school teacher. My grandfather was an artist. And from a very early age, I found a lot of refuge and joy in reading and learning. And that became a way of understanding the world. Because I'm 50 and around the time I began my education was just the beginning of the inclusion mainstreaming movement. The Rehab act had been passed. The Americans with Disabilities act happened when I was in high school, and it took a long time to get into a more inclusive environment. So a lot of people were doing social things. I was doing various forms of academia. I am able to read, read very quickly, and it became a way of finding joy and understanding the world.
[00:02:42] Speaker A: Yeah, I can relate. Throughout my academics, I became somewhat of a bookworm in college. I was the only extracurricular activity you would really see me in is recording music and performing live on stage.
[00:03:12] Speaker B: Oh, that's wonderful. I, I, my other avocation, I teach theater to young adults on the autism spectrum and with other disabilities.
So that's.
[00:03:28] Speaker A: Yeah, yeah, I got in to acting very recently, and I do it semi professionally, but I'm very much amateur compared to virtually everyone else I know who does it for a living, and that suits me just fine.
People think that there's only one type of cerebral palsy, and that's spastic cerebral palsy. And apparently everyone who has cerebral palsy is in a wheelchair.
I happen.
[00:04:23] Speaker B: But I know what you mean. That stereotype is very real, that they also tend to believe that government programs or disability organizations will finance anything we need, much less want to do. I mean, my doctor only my doctorate took me 15 years because I had very little money as an adjunct professor. And when I went to vocational rehabilitation, they told me I belonged in a sheltered workshop.
So having already had a master's by that time, it wasn't going to do that.
[00:05:05] Speaker A: What did you get your masters in?
[00:05:09] Speaker B: Well, my, my undergrad bachelor's degree is in history. My master's in what's called liberal studies, it's more the liberal arts in general and my doctorate, which is what's called a Doctor of letters, which is a European PhD that most American universities don't have, but mine, Drew University in New Jersey offered it.
My doctoral dissertation is on the non violent aspects of warfare, propaganda, settlement and so on, and disability inclusion around the world.
[00:05:47] Speaker A: How long did it take you to write your dissertation?
[00:05:54] Speaker B: I was writing it almost full time for about 10 years.
I did some research throughout the United States as well as traveling to Australia and South Africa to wonderful places for people with disabilities, by the way, that have even surpassed the US in inclusion, both in terms of physical access and a welcoming, productive, self directed attitude.
[00:06:26] Speaker A: How long did, how many pages was the dissertation and how did you choose the topic?
[00:06:39] Speaker B: Well, the dissertation is about 200 pages. I, I chose the, the warfare topic because I'm the son of a Vietnam veteran. So I was fascinated with different things that were happening during the Cold War at that time around the world.
And the disability angle came from my mentor who I ran a theater program with, Ms. Leslie Finelli, who's now retired in Florida. And she trapped. She and her daughter traveled with me to Australia and South Africa. And we decided since those countries were very progressive in the movement for inclusion, that that would be a good angle to also explore. And so we added that. It's one of the ironies of history. It's unfortunate but very true that South Africa, even under the worst of the apartheid white supremacist system, and I'm in no way defending that, I want to make that very clear, had full disability inclusion as early as the 1960s in a way no other country on earth did at that time.
[00:07:56] Speaker A: Wow, that's, that's unbelievable.
[00:08:02] Speaker B: Apparently one of the leaders had a niece who had gotten polio and he basically got the business community together, said, look, I want this country to be accessible to what were then called handicapped people. That's the term that was used at that time. You have six months to do this. I don't care what it costs. It's a blank government check. Any assistance you need. If this doesn't happen, I'm going to have anyone involved with this project shot. I mean, I certainly don't approve of the violence or the coercion, but it is the most welcoming and easiest I can get around African townships, which are very poor areas over there, better than I can some parts of the usa.
[00:08:50] Speaker A: That's incredible to just imagine.
[00:08:58] Speaker B: It is.
[00:09:00] Speaker A: Continue.
[00:09:04] Speaker B: I've truly enjoyed my work and I'm blessed to do it.
But what I find somewhat frustrating even now, and although a great many changes have been made, is the general public, and I don't mean everyone by any means, still has this idea that work and education and romance and an independent lifestyle is an auxiliary of our life rather than our own unique purpose as it would be for any other person. There's still this sort of weird paternal assumption that someone else, the government, family support organizations will care for us.
And I'm not talking about legitimate therapeutic needs or assistance with daily living if one needs that, but an assumption that we really do not need or desire the self directed life that you and I, as have many others, have spent a lifetime trying to build under very difficult odds.
[00:10:14] Speaker A: So how long have you been teaching as a professor and given that that's your main occupation, how would you like teaching history?
And particularly with a disability?
[00:10:35] Speaker B: Well, I've been doing it for 20 years.
It's the greatest joy of my life. I mean I would pay to do the job. Just the thought of interacting with young people and having dialogue and explaining, helping them to figure out for themselves the realities, good, bad and otherwise, of history. We cannot, we do no disservice by creating a Star wars world of absolute heroes and villains. Reality is more complex than that.
Just, just an aside, I'm a passionate sci fi person too, so that's where the reference came from.
[00:11:21] Speaker A: But I figured, but didn't want to say that.
[00:11:26] Speaker B: But it is very intriguing. I really want to advance and become an associate or even a full professor, but that will require more research because I will have to increase the size of my dissertation in order to get it published.
So I am trying very hard to obtain funds for that because I would have, I would have to go back to South Africa and probably have to go at least one other place because of the cerebral palsy. I mean I am pretty physically independent when I'm indoors. I move around on my knees, I use the wheelchair out in public, but I'm not able to drive or take notes. So if I'm taking a trip like this, I'm taking someone with me, which means I will have to pay for either for their time or at the very least for their expenses.
And that tends to add up.
[00:12:30] Speaker A: Is indeed grand. Having cerebral palsy and I think literally being serious.
[00:12:39] Speaker B: I know what you mean. I mean I think we make the best of it, you know, I don't want to have people Thinking I'm looking for pity. In many ways my life is wonderful. But I don't have to tell you or your listeners what it takes once we're no longer cute children to navigate in this world, to find the balance between having our own independence, taking responsibility for our lives and getting the help we need without being sold someone else's agenda, bullied into unnecessary treatments or just. I hate this word, but infantilized by what the system thinks we ought to do.
[00:13:24] Speaker A: Yeah, no, no, I can totally give what you mean about hating the word infantilized.
I don't like it any more than you do, but it's very act to a shocking degree of how pervasive it is in how people view art.
[00:14:01] Speaker B: I think the general public has not been made aware. I mean, I have friends with cerebral palsy who are lawyers. I have a friend who's a medical doctor, podiatrist. But what does the public see? Telethons.
People with more severe developmental disabilities who are in workshops and group homes and day programs. And that has its place. I'd be the last person to take that away from someone who needed it. But your experience, My experience.
My dear friend Karen Lynn Kloop, who was the first woman with CP to sue the state of California, who actually became a dance teacher because she had been labeled downs, stuck in a workshop and back in the 70s sued the state of California and became a great advocate for our community. Those are the stories we ought to be telling my friend. Yours and mine and hers. Never mind the same stereotypical pity oriented isolation.
[00:15:10] Speaker A: I mean, if there was a way or a assumption that I or anyone else would magically grow out of cerebral palsy when we, when I became a young adult, I much have missed that pediatrician appointment.
[00:15:46] Speaker B: I missed it too, my friend. I know what you mean. Well, my old physical therapist, Dr. Andrew Kramer, who was one of the pioneers of that movement, who was in practice for 73 years, had a saying that I absolutely love. He used to say, you cure meat, you don't cure people.
[00:16:05] Speaker A: That's very, very true and I couldn't agree more.
[00:16:13] Speaker B: I mean, the idea is that our problem will go away and it doesn't. And if one more person tells me, well, if you didn't drink soda or if you, you know, tried the Botox treatment of the month or some diet or another orthopedic surgery, you would be perfectly fine. I don't believe that. And even if it were true, I don't wish to spend my life running from one expert to another trying to find something that probably isn't there.
[00:16:48] Speaker A: Yeah, yeah, I totally agree with you because it's not there. But even if it was, we've lived all of our lives in a disabled body. We've made the most of it.
And to live out the reds of our lives in a non disabled body, while it will probably offered some benefit, it would seem, because it would be very unauthentic to the way we conduct ourselves. I mean, you take away my speech impediment of what I just call my accent and you would have to be a medical doctor to recognize that I have a abnormal gait.
But the speech impediment is something that I've done countless hours of speech therapy for. Didn't come in until age 7. And then I've developed it over many, many years, since age 7 to where I'm ridiculously proud of it. I wouldn't trade it for anything because it didn't come in naturally. I had to develop it.
[00:19:00] Speaker B: Well, if I may say so you.
I've been around people with a great many impediments and I will say you can be understood very well.
[00:19:11] Speaker A: Thank you. That is speech therapy works.
[00:19:18] Speaker B: And it does.
Even though I did not have a speech impediment when I began my education in a cerebral palsy school, we got it whether we needed it or not. And I have many fond memories. I love this word. It sounds like something out of a sci fi movie of being evaluated by various experts.
And one, one woman said to me that I have a feline personality because I am selected with who I interact with. So to be a smart aleck. During one of these assessments, when she said that, I said, I often find. And I'm sure you find it also humor is the best way of dealing with somewhat unrealistic expectations because anger is sometimes seen as tantrum throwing. It's not often taken seriously.
[00:20:16] Speaker A: Yes, absolutely.
I'm.
I'm a bit too jawcatched for my own good sometimes. But humour, which I don't do enough of in my daily life, is really the antidote.
[00:20:43] Speaker B: It is. I mean, I've gone places and someone will say, are you people allowed out this time of night? Or.
And I'll be very sarcastic. I'll say something like, well, that's my reward because I put my socks on today. Or I passed the math test so they promised I could go have an ice cream or something.
People don't even realize you're being, you're messing with them. They just.
[00:21:11] Speaker A: Yeah, yeah, no, it's like.
And the reason why I don't do speech therapy anymore and haven't done it in years. It's because I felt that I had hit a plateau or if I didn't hit the plateau yet, I would just about to hit that magical plateau where I could keep doing it but there would be hardly any significant gains like there was before.
I could be wrong, but that's what I felt at the time.
[00:22:13] Speaker B: Well, you've been able to make a life for yourself to as, as I say you can be understood very well and there is not much sense in, in pushing for something that may or may not be there. If you got to a point where you felt you wanted to do it again, that's a different matter. But to, to go through, I mean I was blessed with this wonderful gentleman as I mentioned who became a father figure to me and he was damned for being very. For he treated clients like family. He didn't believe in professional distance. And so I was, I was in many ways very close to him. And those kind of relationships are important because I don't have to tell you the way that some people in the medical establishment treatises not well at all.
[00:23:09] Speaker A: No, no. In fact moat doctors, but not all.
[00:23:20] Speaker B: I'm blessed with a wonderful general practitioner that I work with who you know, has a very nurturing manner because I had, I mean and my experience like yours has been better than many and at least we are not in a facility somewhere we are able to lead self directed lines. But that's the reason why I move heaven and earth to try to get these teaching things expanded. Because to survive in this world takes money and I don't wish to be at the mercy of the benevolence. And I put that word in about 20 quotation marks of the organizations in the world.
[00:24:00] Speaker A: Yeah, it's very unfortunately true that it takes a lot of money to survive and to thrive in this world. And so circling back to what you said, the top, it's downright hilarious that some people will think that government programs will cater to every need and do every possible thing when that is just not the cage.
[00:24:54] Speaker B: And the downside for most people, the downside is sometimes even the assistance you do get comes with a price and you're micromanaged by experts.
[00:25:07] Speaker A: Yeah.
[00:25:09] Speaker B: So there's an old African saying, it's a relic of the anti apartheid struggle that I absolutely love. Also it goes I am going to be me as I am and you can jail or beat or kill me. I will not be what you think I ought to be.
That every individual has a right as a Child of God and a member of a free society to figure out for themselves what they're going to do, how they're going to make a living, what sort of assistance they need. And it is not the prerogative of anyone else to manipulate that. Make all the suggestions you want. But in the end, you and I have to figure out what we need for ourselves. And if we need something and ask for it, a sermon about how we should do it or for ourselves, we have it too easy or we're overprotected, solves nothing. It's just an excuse to not bother.
[00:26:09] Speaker A: Yeah, it's amazing how people think that Mel Gore kids, no matter what they are, no matter how ludicrous they are, would somehow improve our lives.
Dared say cured so that we all just want to be cured of our disability because it's so tragic and we always talk about how tragic it is and that we would give anything, anything at all to judge, not be disabled and judge live like the rats of our non disabled counterparts. And so the pervasive societal assumptions are the thing that really annoy me and really frustrates me. Having cerebral for me the third 10 years was the rough learning curve. But when I became a teenager it started.
Well, teenage years came when with its own challenges. But the point I'm trying to make is for me having cerebral palsy is not a problem or not something that I am constantly frustrated with. I am more wholly frustrated and a gap with how pervasive social media conception, downright social, medical, financial, etc. Etc. Cruelty there still is being perpetrated not only behind closed doors but in broad daylight in the year 2024. It's not 1960 anymore, it's not the 40s, it's not the 20s. And it's just mind boggling that we've seen some of the same assumptions that were prevalent way back then.
[00:29:33] Speaker B: I, I agree. I mean, progress has been made. But you're quite correct and I don't feel that way either. I'm certainly not a victim and I'm grateful for the abilities I have. Now I would be lying if I said that I did not sometimes wish for certain things to be a little easier. It's difficult to crawl down a flight of stairs or take half an hour to put on a pair of socks sometimes. But as with you, as with so many, we've, we've adjusted.
We decided a long time ago that we were going to do the best we could with what things were. And I don't think the average non disabled person with Good intentions. Understand that.
[00:30:22] Speaker A: No. And it should be pointed out that not everyone with cerebral palsy had an easy time.
The Hubbard said it's also true. Not everyone with cerebral palsy have a hads a hard time. I considered cerebral palsy a universe, a vast universe within itself. Again, to autism being on a spectrum. And if you met one autistic person.
[00:31:09] Speaker B: You'Ve met one person.
[00:31:10] Speaker A: Yes, one autistic person person.
Same thing. With cerebral palsy we.
[00:31:21] Speaker B: I think the best thing we can do. And you've certainly done it. I've tried to do it in my own way. Many of my compatriots have done it is to develop the talents and abilities we have and maintain at all costs our autonomy.
I do not believe I could have done as well as I have without great deal of emotional and other types of support from my family and friends. And the good idea of independence and maturity and self reliance and all of those things should not become a weapon. I mentioned infantilization before, but I've seen the other extreme too. If you or I need some assistance, we know that we need it. If not a game, it's not an attempt to get out of taking responsibility for doing something. So I'm tired of having to bargain for it.
[00:32:16] Speaker A: Yeah.
[00:32:16] Speaker B: In the larger world, if I. If I went, when I went, as I said, to vocational rehab looking for money, they told me I belonged in shelter workshop. That's insulting.
I made it with a lot of help. And my mother is a wonderful woman who's made many sacrifices, as did my late grandparents and therapists I mentioned and many other people. So it is in gratitude to them and to becoming my best self that I do these things just as you do. And I do not believe in a world where people say, well, you could do that by yourself if you wanted to.
Nobody gets a thrill out of getting help. You know, I. I hate this. Oh, you have a sense of entitlement or. Or you don't understand reality.
Our reality may be different from the realities of people who do not have not only cerebral palsy, but other kinds of exceptionalities, as I call them anyway. But it is no less real. This is what we live and move and have our being in.
[00:33:35] Speaker A: How do your students react to your disability?
And was it different than when you first became a professor, given that that was 20 years ago had still been.
[00:33:58] Speaker B: Well, I have to say I began at the university that I have my bachelor's and master's from, so some people already knew me, which helped. I'm sure there was some curiosity and And I've had people ask questions which I do not mind.
But I think by this time we've established a relationship.
I try to make my classes informative, obviously, but also pleasant.
Young people I teach, mostly freshmen coming into college, are being hit with the wet dish rag of reality. They have work responsibilities and family responsibilities and other classes. So do I follow a curriculum? Do. Do I have the requirements? Absolutely. But I try to find strength and build on them instead of criticizing or I'm taking points off because this paragraph isn't spaced properly or you use the wrong color ink or whatever.
It is necessary as an educator and as a human being, I think, to find the best in people, when that's possible.
[00:35:17] Speaker A: Completely agree.
So, wrapping up.
If there are any inspiring advocates or professors in training or any other type of advocate that wants to get more involved in whatever field in advancing the discussion and how people look and consider and think about disability, and we all do that in our own way. You've been teaching for quite a long time, my friend. What would you. What advice would you give the next generation?
[00:36:20] Speaker B: Well, I would say. I would say first, remain close to those around you. Don't let your quest for independence, vital and wonderful as it is, cause you to become alienated from loved ones and friends. Friends. Don't be ashamed of wanting people in your life. Whether it's a friend, a mentor, romantic partner. It does not mean that you're not independent or you, you have a sense of entitlement and do some real deep thinking. There's something in the advocate or academic world that you want. Don't let outsiders tell you you can't have it. It will be a challenge. It will may take longer, it may take more effort, more money, a different way of thinking, but you're going to get it.
The world is getting better, not worse. And everything you do is a testament to your own ability and to the value of our community as a whole. Just very quickly, I know we're wrapping up. I would also encourage.
I have a historical podcast. It's called things you don't know 4275. It's on YouTube.
I often tell the story in that podcast of people that are unknown.
A woman called the Rosa Parks of Canada, some of the lesser known figures of the American Revolution, African Americans on both sides, for example. I encourage you also to reach out to me through that if I can be of help, encouragement, because I feel it's my pleasure and my obligation to do what I can because many wonderful men and women, both here and no longer on this physical earth moved heaven and earth to help me and and I I want to do my best to give something back.
[00:38:22] Speaker A: Joe, can you say the Name of your pod?
[00:38:27] Speaker B: KAD Certainly. Things you don't know. 4275.
[00:38:37] Speaker A: Could you explain the numbering?
[00:38:42] Speaker B: Well, the reason I had to number is because there are many things you don't know. Websites.
I picked those numbers because my beloved grandfather who was an airplane Mechanic in the Second World War began his service in 1942. And one of my first memories is the final collapse of the South Vietnamese government in April of 1975. So I added a remembrance of him and a remembrance of a tragic but important historical date to lunch.
[00:39:22] Speaker A: Question my friend.
I like to think that both advocates with disabilities and temporarily able bodied people, both legend and now watch that show.
[00:39:48] Speaker B: They do. Absolutely.
[00:39:49] Speaker A: But I'm under no illusion that both groups take the exact same things away from every episode. So ads my guests, what do you hope fellow advocates with disabilities take away from Vince and what do you hope that those who have yet to discover or embrace their own disabilities take away from the zenz?
[00:40:28] Speaker B: Well, I hope that those of us in the community take some heart, take awareness. There is a world out there of people who genuinely want you to have the joy and to share the talents that you have.
Don't think you're surrounded by people who want to control you or who want to limit what you can do. That's self defeating. And for the larger community, I hope that they would understand the place of our struggle.
The great leaders of our community, the Brooke Ellisons and Arthur Sills and Carolyn Kloops, who against even greater odds than you and I are dealing with right now, carved out a place in this world. I'll end this with a quote from my favorite playwright, the Wendy Wasserstein. Our task is to rise and continue.
In other words, to not let momentary setbacks, they're very real, very painful. I don't want to sugarcoat it. Not let them define who we are or persuade us to give up.
And may I just thank you so much for this privilege. It's been a wonderful experience.
[00:41:49] Speaker A: Thank you my friend. And I do hope that you will come back on the podcast again anytime.
[00:41:58] Speaker B: I would. I look forward to it. I think it'd be a lot of fun. I'd like to have you on mine also.
[00:42:05] Speaker A: Thank you. I would be very honored to be on your podcast.
[00:42:11] Speaker B: So you have a good day then.
[00:42:13] Speaker A: Thank you. You edge well, you have been listening to disability Empowerment. Now I would like to thank my guests. You are listener and the Disability Empowerment team that made this episode possible.
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