Workplace Initiatives and the Disability Rights Movement
Transcript
Marsh Naidoo (00:10):
Welcome to the Raising Kellan podcast. My name is Marsh Naidoo and I blog at raisingkellan.org where we curate resources for parents raising children with developmental delays and disabilities. As always, remember that the information provided on this podcast is purely educational, and if you are seeking advice for your specific situation, be sure to consult a professional today. We are recording episode 66, and we will be talking with Colleen Starkloff, founder of the Starkloff Disability Institute in St. Louis, Missouri. This is part of our Sizzling Summers series, so grab that cup of coffee, put your feet up, and get ready for some awesome conversation.
Marsh Naidoo (01:12):
I am truly honored to have you with us today, Colleen Starkloff. She is one of the founders together with her husband, the late Max. They founded the Starkloff Disability Institute, which is based in St. Louis, Missouri. The institute is described as a workforce workplace disability advisor. Colleen, thank you so much for joining us today
Colleen Starkloff (01:49):
Marsh. It's my honor to be invited to talk with you. Thank you very much for inviting me.
Marsh Naidoo (01:56):
I think the institute, in my opinion, Colleen, serves as a bridge between post-secondary education to work placement. Can you tell us a little bit about the work being done at the institute?
Colleen Starkloff (02:15):
Sure. Let me first briefly say that historically Max and I started an independent living center in St. Louis called Paraquad. And it started to be a place of empowerment, a place of recognizing your full potential and deciding what kind of decisions you needed to make in order to live an independent lifestyle. It was also founded to be a source of real advocacy to change public policy. We started that in 1979, and we left there in 2002, and we co-founded the Starkloff Disability Institute because we had established in Paraquad what we thought was a strong, independent disability rights-focused organization that would not only be a voice of people with disabilities but encourage people with disabilities to find their own voice and be their own advocate and to choose if they wanted to live in independent lifestyle as opposed to living at home with their parents or living in institutions.
(03:35):
So then we had to say, Well, we started one organization. We weren't really finished with what our mission in life has been, which has been to create a world that welcomes all people with disabilities. And so we began to think about what that would look like. And we got involved with our local history museum and did a disability rights exhibit, exhibited at the Missouri History Museum. We did some transportation studies and tried to work on more cohesive transportation systems. And I was working on universal design and disability studies both of which I've organized and conducted through the Starkloff Disability Institute, seven national, sometimes international conferences on universal design. And, from 2005 to about 2018, I think we taught disability studies at a local university here, Maryville University. So one thing that we had to ask ourselves is what else do we need to do?
(04:51):
And a good friend of ours, Chancellor William Danforth, who we lost a year and a half ago, unfortunately from Washington University in St. Louis, came to us and we said, Bill, help us figure out, we need to know what's the next thing we ought to do? And he asked one question. He said, If there was just one thing that you could choose to work on that would be important to people with disabilities, what would it be? And we said, employment. Because without the opportunity for a job, you are pretty much relegated to a life of poverty. But employment with it brings dignity and it also brings the capacity for you to have a family and live the life you choose in the community you choose to live in with the assets, to take care of a family if that's your choice, to have the things that you need in order to live an independent lifestyle in the community.
(05:55):
And so we decided to establish an employment initiative. And the first thing we established was a training program that spanned 10 weeks and was taught by a woman on our staff who also has a significant disability. And she had been turned down for a job because she became disabled. The same job that she did before she became disabled, when she went back to her employer and was ready to go to work, they wouldn't employ her because she was now disabled. And she created a wonderful really intentional, intensive investigation into your own self about what you need to do in order to make yourself the next best person for an employer that you may interview with. And that was targeting adults who already had marketable skills. So after that got up and running and was successful, we decided to create Dream Big. Dream Big is a youth-focused program, and we start by reaching out to teenagers in high school and engaging them with corporate partners who we work with.
(07:15):
Companies like Centine Corporation, Boeing Corporation, NE Nestle, Purina Pet Care, Clayco the Bus Company by State Development Agency, Bayer. These are major US companies that are headquartered in St. Louis that we've reached out to, and there are more of them but I'm just naming a few that we could get to engage with us and bring these teenagers to their campus where the company would take them on a tour, would give them breakfast and lunch, would have their personnel sit down and talk with our students and say to them, What is it that you wanna do in life? Here's what I'm doing. Here's what I did. Here's what I dreamed of doing. Here's what I went to college for. Here's what I'm actually doing now, and here's what I was hired by this company to do. So students can understand that you can change your mind as you go along and as opportunities present themselves.
(08:20):
And we wanted them to know that just because you might be blind or deaf or using a wheelchair for example, doesn't mean that you couldn't find a very productive job opportunity within any of these corporations that didn't require that you see or hear or be able to type on a computer or be able to stand up. I mean, those things are not important. Technology has leveled the playing field for folks. Yes, it is. And so there's now really not any other big excuse other than we need to have people with disabilities being forward thinking and forward looking about what their career opportunities can be. So going into corporations rather than giving them a piece of paper or a book about a company or a brochure is more meaningful because you can actually sit down with people who work there who tell you why they love that company and what our students need to do in order to come and work for that company.
(09:28):
So Dream Big got going in 2017, and then I said, Well, that's okay for the teenagers, but we really need to engage college students because some college students are still in their teen years, and maybe haven't quite made up their minds what they want to do, may not necessarily know what corporate America's looking for or nonprofit America is looking for, and what kinds of job opportunities could be available to them and what connections they could make with companies. So we created Access You and Access You is our intervention where we go onto campuses. We have a staff member who is a woman with a disability. She goes onto the campuses and finds students with disabilities and she engages them in conversation. And she does an internship intensively teaching them how to prepare themselves to apply for internships and when to apply for internships. And if they get involved in our dream big summer career camps, they begin to develop personal relationships with company people within the company that they've met.
(10:45):
So they can go back to those people with their intent to apply for an internship. And they've already got somebody inside the company who will encourage them. So that's our employment initiative. And it has different prongs. It's an adult and a youth-focused mission, but it's really working. The adults are finding their own jobs. 80% of them who take our course, the adult course, and the teenagers the testimonials we get from them and from their parents are really rewarding to us and illustrative that we are on the right track in creating a pipeline of talent for America's workforce,
Marsh Naidoo (11:32):
Colleen. And it's also very much so I would imagine you are providing in St. Louis a place that companies can come to in order to find talent. Many companies might be committed to providing diversity, equity, and inclusion in their workforce, but might not necessarily have a pathway to engage the value within the company. So I'm sure as well that the Starkloff Disability Institute would serve as a place where they could come to learn about how this could be carried out in the workplace.
Colleen Starkloff (12:19):
When you brought up an interesting point there in your comment, diversity, equity and inclusion mean bringing in the marginalized groups that here to four have not been valued or understood or welcomed, or visible within most of corporate America. What I'm seeing is that when companies hire a Chief Diversity officer who's whose responsibility is diversity, equity, and inclusion, they look for someone of race, color, or of LGBTQ gender identity. They don't necessarily look to the disability community. And in our community, we could be all of those things. So it's important for us to provide consultation to corporations on what the issues are around disability and diversity and how you can be equitable and inclusive of people with disabilities in your workforce. We talk about accommodations and how to make accommodations. We talk about how to interview people during a hiring interview. We talk about whether or not an individual with a disability has to disclose their disability if their disability isn't obvious.
(13:40):
They don't have to disclose it in a job interview. And a lot of companies are uncomfortable with that question. They don't know if they should ask or shouldn't ask. They don't know how to handle that. But what they're really supposed to be doing in a hiring interview is ascertaining whether or not this person could do a job, do the job for them with or without an accommodation. And so we train companies on that. We have October is National Disability Employment Awareness month and in October we have a workshop called the Workforce Workplace Disability Summit. And companies are encouraged to send their hiring managers, their HR personnel, and anybody else that they want to send to learn how to be welcoming to people with disabilities in their workforce. And we answer the questions that they wouldn't dare ask their legal department because they'd be scared that they'd get fired, but they can ask us if they need a friend in the workforce.
(14:46):
Every time we do this training, all of the evaluations we get say it was great. It was wonderful that a lot of the hiring managers had never spoken to somebody with a disability before. And so they were so glad to know that it wasn't this scary thing that they thought it would be and that they're armed with information about how they can conduct a respectful and informative hiring interview so as to ascertain whether or not somebody with a disability could work for them. So it's important that they have a friend who they can talk to if they're scared to death that they say to us the wrong thing and we're gonna sue them. We don't get anybody into their workforce.
Marsh Naidoo (15:30):
No, we don't, I think that it's a very much nonjudgmental way in which questions, I mean, let's face it, they are societal stigmas that have historically been associated with disability and that's just fact, Colleen, right? But how do we go about making that change by allowing people to ask questions in a nonjudgmental way? Being able to receive that and being able to give the feedback that's needed. And you might have a better way to phrase that.
Colleen Starkloff (16:10):
As people with disabilities, we don't really want to be paned to, We don't wanna be taken care of. And I say that very seriously because my husband Max taught me that in providing the personal assistance that he needed, he was taking care of himself. So he taught me to do the things that he needed and I did them. But that was his way of managing his life by having somebody who would provide first personal assistance for him, gave him control over his own life. That's a very important concept, not to feel like somebody's taking care of you. And Max had a spinal cord injury. He was quadriplegic. He couldn't use his fingers to type on a computer. He put a mouth stick in his mouth and typed that way. But I used to say, and I actually still do say it, he could put one arm around me and give me a hug.
(17:06):
And that was fine. That was a connection that we had. But he didn't have to stand, he didn't have to pick me up. He didn't have to bring the groceries in, he didn't have to take the trash out. I was willing to do all those things. But he was an equal partner in our marriage. He was a fabulous father to our children. He and I made decisions together about what we would do in life, except the time I bought that one TV that I didn't tell him about. I got in big trouble for that, for not making it a collaborative decision cuz it wasn't cheap. But we were a team, we were a partnership and we supported one another. He supported me in many ways and he never had a lift a finger to do it. So it's a matter of how you feel inside yourself.
(17:55):
Are you proud of yourself? Do you have dignity? Do you your self-esteem intact? Your disability isn't an issue. It shouldn't be an issue, but it is. If you're not proud of who you are and if you're constantly trying to pass as someone who's not disabled, I'm a disabled woman. Most people who meet me wouldn't know that I have ADHD, attention deficit, and hyperactivity disorder. I didn't even know it until I had a son with ADHD. Then I thought, Oh hey, that's me. And also I now have cancer and that's a disability. It's knocked me for a loop. I'm fighting it and I'm gonna win. But still, so I have two disabilities that don't show, but I have a great deal of pride in myself. I had a great partner who taught me how to live with a disability and who had a great deal of pride in himself. And I think those are important lessons that we as adults need to impart to children as they're coming up. Never think that they're any less than who they are and who they want to be and never discourage them from being who they want to be. That's our duty, that's our responsibility and that's our gift to children with disabilities. And that's part of what's behind my motivation in creating these programs around employment at the Starkloff Disability Institute.
Marsh Naidoo (19:28):
Colleen, I wanna circle back to the dream big summer camp that you guys have coming up because there's just a short window left.
Colleen Starkloff (19:40):
As we move through the summer, if we can go onto the campuses, we will be spending time with our students at St. Louis University. They have very generously given us space on their campus where we can work with the students. So we'll have all the technology we need to zoom them right into the campuses of the companies that we'll be working with. It's my hope that if it's safe, that we could actually take our students on campus. But if B2 a raises its ugly head or Covid jumps back up or some other variant we'll keep our teenagers safe by continuing in a virtual format.
Marsh Naidoo (20:25):
But this is an amazing camp. Colleen and I will put the link in the show notes as so that parents can take a look at what's being offered at the Dream Big camp. Let
Colleen Starkloff (20:39):
Let me share something with you, Marsh, too. That deadline of May 13th is important for us so that we can plan so that we have materials and so that we can have let the companies know how many students we have coming. But the camps are being spread out into July. There's four camps this year, so I don't want any parents to be discouraged from contacting us anyway. If they don't make it into the first camp or if they think they're too late and they can't sign up for the rest of the summer. That's not true. That's not necessarily true. They should still try to contact us and find out if there's room in any of the other camps because they do go later.
Marsh Naidoo (21:19):
And you'll also have opportunities from my understanding that later in the year as well. Yes. So that would be good to get onto the newsletter, to get posted onto what is going on.
Colleen Starkloff (21:37):
We have communications among parents for any parents who wanna communicate with other parents. We do have that opportunity. We also have a year round curriculum, so we have different speakers who will speak to the students. And it's been virtual for the past two years but we bring in, for example a month ago we brought in a doctor who has multiple sclerosis and she's a neurologist at Washington University and she, she was beamed in, zoomed in to talk to our students about considering careers in healthcare. And she uses a power wheelchair. She's not able to walk. She's a professor at Washington University. So she's a great inspiration to our teenagers to think very broadly about their opportunities, including being in healthcare. There are a lot of doctors who don't understand disability and think that they need to cure us and not of us of us are gonna be cured. But that doesn't mean that we can't make contributions as workers in our society, in our economy. And so there's a different speaker every month bringing different ideas and different opportunities to our students. And then we have the summer camps during the summer. So I encourage people to definitely get on our mailing list so that we can include them.
Marsh Naidoo (23:11):
Colleen, you and Max started Paraquad of 40 years ago. Gosh. I mean there's been just the change that has happened within the disability community itself. Can you just speak to some of those changes that she has seen and have experienced Colleen?
Colleen Starkloff (23:34):
Sure. I've been involved in, a lot of them have my colleagues all over the country and now all over the world. We as a disability community, as a disability rights community, have aligned our forces, if you will to work on public policy changes and institutional-type changes so that people with disabilities have greater opportunities than we've ever had before. So when Max and I first started out I met Max in a nursing home. He was living there because he needed personal assistance to get bath and dressed and out of bed every day. And I fell in love with him just like that. When I saw his face, saw his eyes, saw his smile, I saw in him a man of real compassion for others, it was immediately clear to me his integrity was written all over his face. So we started dating and we got married two years later and got out of the nursing home and into our own apartment in the city.
(24:41):
At that time it was, I said to him, he said, Where do you wanna live? And I said, You find a place to live. I don't think we're gonna be hard to find a place where we can live together because of the tremendous lack of access in housing. There were no lifts on the buses. You couldn't ride a public bus anywhere in this country. You'd have to have some kind of a specialized vehicle with a lift on it to come and pick you up. That's no longer the case. We're making some headway with accessibility codes, but the ADA, for example, is not a housing code. So I'm promoting universal design public housing, housing that's funded with public, housing and urban development funds, which are federal funds have a requirement to have 5% of the units accessible and 2% for people or hearing or visually impaired.
(25:38):
That's not enough. That doesn't reflect who's living in this country. And it also dictates where you're gonna have to live the only accessible apartment in the building. So I'm promoting Universal Design and trying to get builders and developers to understand that if you build housing that's universal, you're building housing that anybody could live in and if their needs change, their house can change for them and they don't have to move just because their house is inaccessible. Those are two developments flying on planes, which I'm not bragging about. It's become worse instead of better, but you can fly on a plane, whereas it was a whole lot more difficult before the Air Carriers Access Act. But is, I'll give you a little tip, an effort right now to try to get the Air Airlines to be more accessible to people flying in wheelchairs. And we're really, I hope in my lifetime I see that happen because Max and I had to jump through a lot of hoops and we got some, sometimes his wheelchair came back broken.
(26:43):
Yes, when it came up out of the belly of the plane. So we're now a big effort going on in the Department of Transportation to work with plane designers to solve that problem. And it'll take a while, but we're working on it. But I used to have to look for hotel rooms and I would have to park the van in front of the hotel, go in and check the room that had been reserved for us that they said, You can get into it with a wheelchair. And I would say, No, we can't use that room. Give me a room key gonna and take me around until we find a room that we can use. Now there's hotels all across the country because of the Americans with Disabilities Act that have accessible rooms. Now you can argue about how accessible they are, especially when they put platforms underneath the beds.
(27:36):
That's become a big issue. But the fact is that it's required by law now that places of public accommodation must be accessible if they're newly constructed or they're doing a major renovation there's public rights of way curb cuts. That was one of the early issues we worked on in the seventies, so that if you were in a wheelchair are using a walker or a scooter or crutches, you didn't have to try to navigate a curb. You could just cross the street and there better be a curb cut on the other side. In the early days there you might go down in the street and cross and there wasn't a curb cut on the other side. But that's going the way of the white buffalo now. And that you're finding more communities that have curb cuts on all four corners and you're having textured crosswalks. So people who are blind or have low vision can cross the street safely.
(28:33):
And those things didn't even exist when Max and I first got into this fight. And it's a fight. I think what we've also been able to do with some of these changes, and I've only listed a few, is begun to change attitudes. And I think that's what's led to this increased awareness that people with disabilities can be productive in the workforce. But first, we had to require that academic institutions were accessible, that children with disabilities could go to their neighborhood public schools and could ride on school buses. I mean, that didn't come along until 1975 and it was weak at best until the eighties. And the 94(1) 42, which was the first law, became the Individuals with Disabilities Education Act. And we've made tremendous advancements so people with disabilities can go to school. But even before that was passed, the rehabilitation of Act of 1973 required that all recipients of federal financial funds had to become accessible.
(29:42):
That's colleges and universities who get research funds, massive research funds. And so they couldn't discriminate against hiring people with disabilities to work for the university. And they darn well couldn't preclude students with disabilities from coming to school on the campus. So it's been a sweeping change, but it's been sweeping around the world. I was in Rome in 2015 and saw truncated domes in the curb cuts as I was walking around Rome and I got on the U rail train and rode north to where my mother was born in Italy and I was able to ride the trains and I saw where the lifts were on the trains. I saw train stations that had truncated dome pathways through them for blind people to
Marsh Naidoo (30:29):
What change. And I'm so grateful to you for coming on, but I would love to speak to you again in the future if at all possible.
Colleen Starkloff (30:40):
Sure. It's my privilege. I think we've just sort of scratched the surface here, but I think that it's testimony to the fact that people who believe in themselves and fight for themselves can truly achieve change. And we're not finished.
Marsh Naidoo (30:55):
No, we're not
Colleen Starkloff (30:56):
Finished. We're still going forward. And your son needs to be a leader of the future because he has a mom who believes in him
Marsh Naidoo (31:04):
110% <laugh>.
Colleen Starkloff (31:07):
Yes.
Marsh Naidoo (31:10):
Colleen, thank you so much for your time today and what an absolute treat to listen to you to learn from your experience and from your wisdom. And I look forward to talking to you in the future, guys, so that our listeners have a good idea of what's going on in terms of the Dream Big summer camp. Let me give you the dates of the camp and let you know what's happening. The first camp is going to be held June 6th through 10th. Now this is a virtual camp and you can be anywhere in the world and sign on for it as long as there's obviously spots available. It is a fully virtual camp session on Zoom and per the program that I'm reading from. It is described as a virtual exploration of various on ground careers highlighted for students who are still deciding on a career path.
(32:23):
The second week, which is in person would be June, 20 to 24th. And this camp is named Innovate. It is for students interested in STEM careers. That is science, technology, engineering, and math. The third camp, which will be held July 11th through the 15th, is a hands-on camp for students who are interested in trade and technical careers. This is going to be held in at the St. Louis University and probably would be more aim towards students that are living in that area. The last camp, which is gonna be July the 25th to the 29th, is named Endless Possibilities. And this camp, the program reads, it's a combination of various career opportunities for students who are not quite sure what career option is right for them. So stay tuned for more information and I will be posting the links to the Starkloff Disability Institute in the show notes so you could find information to the camp on that website. Until we see you guys the next time, remember as always, get to the top of your mountain. This is Marsh Naidoo signing off.