Chatting with Katie – Self Advocate Jeff Arseneaux – Transcript

Chatting with Katie – Episode 1

NFHF Self Advocate – Jeff Arseneaux

General Transcript

Katie Corkern (KC)   Jeff Arseneaux (JA)


KC:         Hi everyone, we’re live at the NFHF center today and I’m going to interview Mr. Jeff Arseneaux.  Jeff is a self- advocate and the NFHF Adult Program Coordinator.

So, Jeff, tell us a little about yourself.

JA:          Well, I’m 44 years old, I was born with Cerebral Palsy, I like to say CP for abbreviation, and I hold a few different jobs and a few different roles.  But the main thing we’re here to talk about is my role here at NFHF as the adult program coordinator.

KC:         So, Jeff, tell us about where you went to school.

JA:          I’m from New Orleans and I went to 8th and 9th grade at De La Salle on St. Charles avenue.  It went co-ed right after I left.   You know, the reason I went to De La Salle is that mom and dad were concerned about my special needs and whether I needed special classes, which I did – mainly because I needed a few accommodations that    De La Salle had.

KC:         Tell us about an accommodation you received at the school.

JA:          Well, mainly they allowed me to leave class early and it wasn’t because I couldn’t walk, it was because when I would rush and try to get to class, the more I’d rush the more I’d stumble and maybe fall and hurt myself.

KC:         That’s an easy accommodation to implement.

JA:          And you know, when you talk about accommodations you always think about the big stuff.  But for a man with Cerebral Palsy, it’s not the big stuff – it’s the little stuff that makes a big difference.

KC:         And leaving early from class made a huge difference?

JA:          Yes.  And you know with every accommodation there’s always some public kickback.  My best friend came to his mom one day and asked “Why does Jeff get to leave class early?  That’s not fair.” and I mean… the right response is to sit down with that individual and explain why it is that I’m leaving.

KC:         That’s a great point.  So, now that you’re an adult, tell us about your job because you have multiple jobs.

JA:          Yes.  You know when I was back at Delgado, I started bagging groceries…

KC:         Wait, stop.  You were at Delgado?

JC:          Yes.

KC:         And tell the people…

JC:          College

KC:         He went to college!  He’s a college educated man.

JA:          And that’s something people don’t understand and for me, as a man with a disability, I feel like I have to point that out – to explain to people that I went to college but the more I point it out the more egotistical I feel inside.

KC:         You shouldn’t have to do that.

JA:          It’s like a no-win situation, unless we go on Live with Katie, the real deal doesn’t go out.

KC:         So, tell us about your job.

JA:          Alright, I was in management from 25 to about 37 and I moved back to Louisiana when I was 41 and currently I’m working at Office Depot, I’m a sales rep and I’m actually running their furniture department.

KC:         You run the furniture department at Office Depot here in Covington?

JA:          Yes ma’am.  And I work for NFHF.  I’m the adult program coordinator. Which you’ll hear from me for a while about my job here.  What I do is, I’m trying to target an inclusive environment and trying to get adults with disabilities into the society and to where they feel comfortable.  Because you know, it’s amazing when you’ve got like ten people with disabilities all sitting at a table at their house and when they go out for coffee you see two different people because they’re not comfortable.  But six months later you see them comfortable and I’m a part of that.

KC:         And it’s awesome!  Okay, so, what do you like to do for fun?

JA:          Sports! Football!  LSU plays tomorrow night.  I’m a big LSU and New Orleans sports fan.  I love the outdoors.  I went about ten years where I went on a cruise, by myself, every year. I just took off, went on a cruise.  I like relaxing and I love people.

KC:         Yeah you do, that’s apparent.   Anytime I go somewhere with Jeff so many people are like hey Jeff and I’m like do you know everybody and he’s like- pretty much

JA:          Yeah, I do… not everybody likes me, but they know me.

KC:         They do like you.  Tell us, what’s a common misconception people have about you when they see you?

JA:          I think the most common thing, and it really frustrates me, is that people don’t really realize how much emphasis I’ve put into making a living and my work ethic.  It’s a major part of my life.  It’s why I am who I am today, because of what I have done for a living.

Another thing is the side of me that people don’t see.  I have a side of me that enjoys being nice and compassionate.  And talking about me, what I’m doing. I was with somebody the other day and you know as a man with CP it’s hard to even talk about the things that make us feel good, like advocacy.  Like being at the Capitol advocating, that brings joy to me.  Sometimes is like a door you’ve got to open with certain people because they’re not comfortable with it.  They know it makes me feel good, but they don’t know how to engage in conversation so it’s a two-way street.

KC:         That brings us to our next question that a Facebook fan submitted.  She said that “Often times people were hesitant to talk to people with disabilities. Because they are afraid they might say something that would offend that person.”  So, what advice would you give her?

JA:          You know, I’ll go back to the question before.  Misconceptions!  When somebody wants to engage with me and they’re scared they’re going to hurt my feelings, or anger me – I would rather them hurt my feelings and make me angry than not know the truth.  One the things that happens if somebody sees me in a coffee shop, they’ll go to “John” “Bob” or “Sally” and ask them “What’s they deal with Jeff?  Tell me a little about him.”  Well “Bob” or “Sally” might not know the truth.  They don’t know!  So how would somebody get to know me?  Well, there’s only one way.  I’m the only one who knows the whole truth.  So, come to me, ask me those difficult questions.  That’s the only way that you’re going learn about me.  One thing that I pride myself on is that what I’m telling you – I look in the mirror and I tell myself that if I have a person who I’m curious about, I need to take my own advice.  Walk up to them and say, “Hey man I’m Jeff, tell me about yourself” and open that door.

KC:         Yeah, don’t be afraid.  He’s human.  Just like I am, just like you are.  We want interaction.  We want relationships and we want friendship.  That’s a great answer Jeff.

Tell us, how did you become a self- advocate?  Were you always able to advocate for yourself even when you were younger?

JA:          This is a loaded question and it gets down right personal.  But that’s alright, that’s who I am.  You know, I went thru some rough times in life.  The main reason they were rough is that Jeff Arseneaux did not like that he had Cerebral Palsy.  Jeff Arseneaux was busy trying to climb the corporate ladder.  Jeff Arseneaux was trying to be somebody who he would never be.

When I got back to Covington, Louisiana I was unemployed.  Unemployable.  I was in bad shape.  I was sitting on my mom’s couch, thank you mom for everything you do for me, I was sitting on the couch day dreaming about the last time I was truly happy.  I thought about when I was nine years old.  Me, Keith and John Dudley were at Cerebral Palsy sports event in Miami and we were all in the hot tub.  We were waiting on the nine-year-old girls to come, but they never came.  We were talking about what we experienced in school that week and it wasn’t good, it was very painful.

But I felt included, so I took that and at 41 years old I’m saying to myself “How can I get that feeling back in my life?”.

KC:         Feeling included.

JA:          Yes, and I wound up on the steps of Northshore Families Helping Families.  I just took baby steps, trying to get involved and I tell you what, three years later I don’t recognize who I am now.  I really don’t.  I don’t have that corporate job.  I’m not a CEO.  I don’t have a wife, but you know what, I’m full.  I’m completely content with life the way it is because I’m out there trying to give back.

KC:         Yes, you are!

JA:          And that’s what you guys do every day for me.  Your education specialists, the people here.  I see it every day from all of us and the whole advocacy community.

KC:         Well Jeff, here on the Northshore and here at NFHF, we’re lucky to have you.  We enjoy having you on board and you’re paving the way for other adults with disabilities, keep it up.

Alright, a few more questions.  This is from a mom to a little boy with a brain malformation, she said “If you could give advice to parents out there raising a child with a disability, what would it be?”

JA:          You know Katie all I can do is go back to what I wanted, how I wanted to be raised.  And I understand why it didn’t happen, but you know, when I want to do something, I want to do it. I don’t want to hear excuses, I want to hear, Good Luck Son.  But I also want to hear the truth and whether I fail or not I had the opportunity to try.

What I find a lot is a lot of parent’s advocate, advocate, advocate for inclusion, inclusion, inclusion.  But when it comes down to really setting limitations, it’s human nature to hold your child with a disability back.  Whether that’s feeding yourself or getting your driver’s license at sixteen years old.  Really look in the mirror and say, “Am I protecting him or am I holding him back?” and that’s a very difficult place to go.

KC:         It is

JA:          To a parent, because you’re a parent.

KC:         I am.

JA:          You understand that don’t you

KC:         Yes, I do.  It’s very difficult because you don’t want them to get hurt and you don’t want them to fail because you’re a mom or a dad and that would hurt your heart.  But, they need to spread their wings, right.

JA:          But the thing about it Katie is, whether I have CP or not, I’m going to get hurt.

KC:         Whether he has CP or not he’s going to get hurt.  Did y’all hear that?

JA:          Guess what, you fall in those high heels, I know you do.  We all fall. We all fall.

KC:         You crack me up!  That’s a great point.  We all fall, so let them go, that’s great.

And you drive, right?  When did you get your license?

JA:          I got it when I was like seventeen.  That was one of those things that I had to wait on. Seventeen, almost eighteen, I got a driver’s license.

KC:         And, do you speed?

JA:          I do.  I do.  Get out my way!

KC:         He does. State troopers need to keep a watch out for that.

JA:          I’ve got some connections, I hope he’s not watching.

KC:         We had a few questions come in on this topic and we won’t spend too long on it but I know people want to know.  Is Jeff Arseneaux is single?  Tell us Jeff, are you taken or are you single?

JA:          I’m single.  I’ve been single my whole life and to be honest with you it hurts, but it’s a part of me and that goes back to that question we were talking about when a part of who I am is a lot of people love me, a lot of people want to be around me, but the moment I cross that line and say, “How about having dinner with me?” they come up with some excuse of why it’s not appropriate to have dinner with me.  And frankly, I don’t understand.  I really don’t.

KC:         Is dating, for adults with disabilities, the same as it is for everybody else?

JC:          I can go on all day about dating but I won’t.  There’s some fear out there with people who aren’t disabled about the unknown.  Can he have children?  Will he be able to take care of my child? I mean the older you get, every age that you get, it becomes more of a different issue.

So those questions out there, I just want to break the door down and say “This is who I am”.  You know I look at people out there right now who are single, and I look at people out there who are disabled and married, so it does happen.  It does.

KC:         you’re single and looking?

JA:          Yes.  You know the whole cliché, you’re not going to find when you’re looking, but I’m so sick of hearing that.  Don’t tell me that.  Break the door down.  If you want have dinner with me, give me a call.

KC:         Okay, so here at Northshore Families Helping Families, and all the Families Helping Families centers in Louisiana, we support inclusion.  That means promoting an environment where it involves everyone, in all aspects of life.  People with and without disabilities.  So, what does inclusion mean to you?

JA:          Another loaded question.  I’m starting to think I just like to talk.  Inclusion to me is kind of like being in reality.  If I want to do it, I need to find a way to do it. I read an email yesterday that had a piece on inclusion and it talked about the restaurant example and what the restaurant example is – if I’m a family and I’ve got somebody in a wheelchair who is seriously disabled and I want to go to a five-star restaurant.  In my head, I’m thinking “Oh my god, what if he spits on somebody, what if he drops the fork”, all of that is irrelevant.  The only thing I need to do as an individual is make a phone call and say “Hey, here’s what I’ve got going on, I’ll be there at seven o’clock.”  Chances are they’ll say I’ll see you there.  But, they’ll be prepared.  That brings me to a whole other level.

And when we think about inclusion, for me it’s not about you need to change, it’s about what I can do to help you help me.  Don’t just stand in the background and wait for the parade to come to me, we need to go out there and get in the parade and that is exactly what the adult program is about.

KC:         It is!  When people with disabilities, kids or adults, when they’re immersed into their community of people, people with and without disabilities, do you think it promotes acceptance?  Do you think it will help people understand and therefore accept?

JC:          It will, but the only way people who do not accept are going to accept is by getting engaged.  Shaking that difficult hand of that lady in the wheelchair.  Coming to the St. Johns coffee shop, no matter how uncomfortable you are.  It’s not a very comfortable thing right now for some people, I realize that.  But sometimes you just need to do it and be uncomfortable.

I want to briefly say, we at NFHF – the adult group, every Wednesday, most Wednesdays, we’re at St. Johns coffee shop (in Covington) from 1:00 p.m. to 2:00 p.m.  If you’re looking for a place to just sit back and be a spectator and watch inclusion happen with an open mind.  That’s we’re we need to be.  That’s what you’re asking me to do, that is what I do, create events that create inclusion.

KC:         Yes, and you do a great job too.

JA:          I need to write that down.

KC:         Our last question is from my little guy, Cooper, who is six years old and he wants to know – If you could have any super power, what would it be?

JA:          That’s easy.  I want a loving and caring environment for everybody involved.  Whether you have a disability, or you’re a senior citizen that needs help crossing the street.  I want to be a part of being that person who helps that older person cross the street.  I want to be that guy who brings that kid to the Special Olympics for the first time.  But as I look around, we need help and we need to be a part of that help.

KC:         So, everybody can have this super power, like realistically we could.  I think you already have that super power.

JA:          I do.  I wasn’t going to brag because I told you I was working on my ego, right…

KC:         We’ve got comments from the people watching us on Facebook, let’s check them out.

KC/JA:   (Replying to live comments.)

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