Alvaro Gutierrez interviews Marca Bristo, CEO of the Access Living of Metropolitan Chicago

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Alvaro Gutierrez

Today our guest is Marca Bristo, she is the president and CEO of the Access Living of Metropolitan Chicago.


Alvaro Gutierrez: Hello and welcome to Project Access For All! Today our guest is Marca Bristo, she is the president and CEO of the Access Living of Metropolitan Chicago. Thank you so much Marca for being with us today!

Marca Bristo: Thank you very much for having me!

Alvaro Gutierrez: It’s my pleasure Marca and we would like to know as the beginning a little bit about your life.

Marca Bristo: Sure . . .Well, I grew up in upstate New York on a farm. I didn’t really know much about disability. I did not have a disability. In hindsight I realized my mom had a disability. She had cancer twice when I was little and lived her life with very little significant respiratory challenges and then after moving from the farm to some other small towns in upstate New York. We ended up settling in a small village called Westfield and after I left my hometown. I spend a year in the Philippines as an exchange student. It’s really opened up my eyes about the world of America at the global level and I began packing some of my international interests, which was sparked many weeks later. I ended up going to college in Aloft, Wisconsin and came down to become a nurse midwife and I was out with some friends one night and my friend’s dog knocked my shoes into Lake Michigan and I wanted my shoes back (laughs). So I dived into Lake Michigan to retrieve them. I didn’t realize that it was very shallow because we were on a very long pier. I broke my neck at the C70 level and that began my journey into the world of disability and eventually into the world of disability rights.

Alvaro Gutierrez: And today what do you do?

Marca Bristo: Today, I run an organization in Chicago called Access Living. We were modeled after the first center for Independent Living CIO in Berkeley. I’ve been at the helm of that since living since it’s founding. It stemmed out of people at the Rehabilitation Institute of Chicago looking into what they should do because so many young people that they were discharging from their rehab hospital were ending up in nursing home and shortly after my accident. They invited me to come to committee meetings and eventually I went and didn’t think their plan of developing a transitional living center made sense and that was one of my first transformational moments because they actually listened to me and they said “why would I not want to live there?” and I explained that my problem was not that I needed a place to learn how to mop the floor and make the bed. It really became more of an issue that the home I had at the time I broke my neck had 7 steps and my real need was not for practicing how to live with a disability it was to find an accessible home and to the credit of the rehab institute. The people who were working on this ideal listened to myself and some other disabled people that were in this meeting and folded up their plans and decided to start and when they did so. They tripped upon this great organization in Brooklyn and decided that access living would be modeled after that and we became one of the first ten heavily founded centers for independent living. For your listeners who don’t know what a CIO is you can get more information at The National Council on Independent Living is a membership association of all of us. There’s now in excessive 500 such organizations scattered all around the country and what makes us different from other organizations is that we are really walk the walk and talk the talk about disability inclusion and empowerment. So a majority of our board, a majority of our staff, a majority of our management our people with disabilities. We work with people with a wide ray of different disabilities. And we do a mix of services to help people become more independent living as well as advocacy. We usually appear based approach so our goal is to not only assist people through service delivery but to get those people more engaged in the advocacy agenda of our organization and as a result of this model. We became to some extent the national infrastructure back when The Americans with Disabilities Act was being organized. So we had boots on the ground so to speak or wheels on the ground and when the National Council and Disabilities called upon congress had passed The Comprehensive Civil Rights Law. The network of centers for Independent Living became a very important part of the grass roots apparatus that worked with the people in Washington both to get feed back on the new law as it evolved. But also to mobilize local constituents to weight in with their congressman, and as a result of that we passed the most comprehensive civil rights law in 1990 since the passage of the Civil Rights Act of 1964.

Alvaro Gutierrez: Very interesting how you say Marca and for our listeners. Can you tell us a little bit about those services you provide?

Marca Bristo: Sure. Well each center takes its direction from the local community. So while we all have a very similar philosophy and we all provide full 5 course services. We do them in slightly different ways and many of us have additional services beyond those course. The course services are information and referral, peer support, independent living skill training, and now advocacy and just last year the law was amended to add a 6th course service called transition and the transition services that the centers are now will be providing will both be transition to help people get out of institution. As well as for teenagers who are making the move from high school to college or high school to work. That’s a new service many of us have already been doing a lot of that work but this will now make it an obligatory service that centers all around the country will be providing.

Alvaro Gutierrez: Marca if I may you were talking about transition. How was for you personally the transition that you have called after the disability after your accident and if you have any advice to people?

Marca Bristo: Well, remember that I was already finished with college I had already gotten my nursing degree and I was working as a labor and delivery nurse. So the very first thing that happened it was pretty shocking to the system actually because I lost my job. I lost my home and insurance. I lost my income. I lost my transportation. I lost some of my friends, unfortunately for me my family and my friends really rallied around me. And that was hard, I have to be honest with you it was really hard and for me my way of dealing with it was rather than to get depressed was to get a little angry (laughs). And that anger I do believe that when injustice when we feel injustice it often manifests anger and if you can turn that emotion into writing those wrongs its not only a way to help you deal with the anger but also to use it for a force of good. But I can tell you on a, what ended up happening for me was a woman who I never even met who was the head of nursing at a very prestigious woman’s hospital in Chicago called me up and she had read an article about me and asked if I’d like to come back to work. And it had only been about maybe 6 months since my accident and it still shocks me to know that my answer to her question was “I cant work” and what I meant was honestly I cant work as a nurse. Even though I certainly could and I just bring that up to show how quick we internalize the messages that the rest of the world places on us and lucky for me she asked me to come in anyway to talk with her. So she did with the ADA later what have us do to assist with all in 1978. She did job sharing. She took 3 jobs apart and put them together differently so I could do the secondary half and other nurses could do the more of the ambulatory half. Once I went back to work my world opened up quite a bit. I learned how to drive a car since I never had because there were no accessible trances. But I have to tell you the experience of living in my city in Chicago in 1978 and I think Chicago was ahead of its time compared to other cities. We already had a huge firm costs down in the city center not very many. But it was like going into a third world country, you know all the things you couldn’t do simply because you were using a wheel chair for mobility were really dramatic. You couldn’t go to there was only one movie theatre in town that I could go to most restaurants they had no accessible bathrooms, so we kinda had to time how long you were out. I took more kitchen entrances into restaurants and hotels than I care to remember. I rode on freight elevators to get into world-class museums, one time with a rat. So it was pretty dishearten and then I guess the other thing I would say. I was only 23 when this happened so I was still you know dating and out in the social world. And I was lucky that I had a lot of friends that you know still invited me to do everything with them. But I can tell you that the men that I would interact with there was a day and night difference. The same men that use to flirt with me now would kind of look right through me as if I wasn’t even there. So there was a lot to adjust to. But unfortunately for me my boss sent me to California to a conference and I met a lot of people with disabilities. I saw how they had curved cuts everywhere. People were out and about in the community who use wheel chairs and who were deaf and blind and I remember staying up all night with this woman, disabled woman and asking her “how come everything’s so different here?” And she told me about these activists that had first taken on making the UC Berkeley campus accessible but then later went out into the community and advocated for change and so that gave me my voice back it gave me my power back. It made me realize that those curves that prevented me from going around the corner could be eliminated with a simple you know (laughs) hammer to break them up a little and what we needed was some reform in our laws and our policies to improve things.

Alvaro Gutierrez: Well that has been powerful Marca. You have me thinking a lot of things now. Okay, let me put my mind together now because I have a few more questions related to this. (inaudible) First, do you think and this is something that I haven’t seen anywhere but you have talked about this so I’m interested in this. You were saying that because of the accident as a nurse you were able to do certain things, certain things you were not able to do. That you the person that brought you into the organization was able to adapt the job.

Marca Bristo: Yeah

Alvaro Gutierrez: to this situation. My question is do you think most jobs we can do, people with disabilities they were a little bit changed in certain degrees is that understood by your organization is that done a lot because I never read about that before.

Marca Bristo: Yeah, it’s called job sharing. Where they’ll you know take care from one job and you know reassign care. I do think that people with disabilities if you take us as a group in other words people deaf, blind, wheel chair users etc. etc. there’s gonna be people with disabilities that can do almost any of those jobs not every person will be able to do all of them. But there’s some things for example, that a blind person could do that a wheel chair user might not be able to do and vice versa. So I think that the common element of course is the bias that people have about our ability to do things and that. Even though the American Disabilities Act prohibits discrimination and its very important legal tool. It’s really hard and probably not possible to legislate people’s hearts. You know what they think how they feel. So you know my what I believe we have to be doing more of is helping to educate people on positive examples of people who are already doing a lot of the work that they may think they’re not able to do and using the law of course when those rights are violated. But I definitely think that there are many jobs that people with disabilities are very capable of doing. They’re just often not given the chance and interesting that in those examples that we know of where people have made the adjustments or provided reasonable accommodations to people. So that they could work tremendous things happen they are often sitting side by side with non-disabled people many with whom I never had the chance to get to know somebody on a personal level and you know that’s what really begins to break down stigma. When you’re you know becoming friends with coworkers with. There’s nothing better to help open people’s thighs than that process of getting to know people because it provides both dialogue and it helps break down some of the myths that so often separate us.

Alavaro Gutierrez: How interesting Marca! I need to mention for our listeners, I know of a surgeon who is a wheel chair user hearing along. He was shot and after the situation happen he asked that the hospital “I would like to still be a surgeon. But I need some meditation with materials in the surgery room etc.” and they were able to do that. And he’s a very well known surgeon.

Marca Bristo: Yeah, there’s many examples. In fact I wanna make sure that I erase the stereotype that I may have left with my own comment that I couldn’t do that nursing. There is a organization called the National Organization of Nurses With Disabilities and there are enormous opportunities in the field of nursing for people with varying disabilities and nurses will tell you many of them stay in the work force long enough that they age into their disabilities. So there’s numerous examples of people who have been working for a long time and they’ve managed to accommodate to be accommodated in the work place. However, what we still see are barriers in life insurance or barriers sometimes in the academic preparation where they’ll say that to become licensed to be a nurse you have to be able to perform a certain number of tasks. Even though no nurse provides all of those tasks and there are some specialties that a nurse could go into without having. For example to be able to make a bed or lift a patient. So, I think that we have still a long way to go to breakdown some of those systemic challenges, barriers and that’s why organizations come together. There’s an association of lost students with disabilities, there’s an association of lawyers who are deaf and you know increasingly as we see more and more people in the work place. I think we’ll begin to see some of these remnants that still create barriers or discrimination against people with disabilities will begin to see them come apart.

Alvaro Gutierrez: Marca, another question comes to mind. What would you recommend to someone with disabilities who wants to become anything? Whether it’s a doctor or lawyer that they don’t know when to begin for precisely what you are saying they say, “I am not able to do 100% of the tasks. How am I gonna be able to show them I have the passion and the capacity to do many of those tasks?”

Marca Bristo: Well, I guess the first thing I want to say is you gotta start young. Right? Way back when in America in the education system people with disabilities have individual education plans or five or four plans. These are very important tools that students should become more involved with themselves at the earliest age possible. To make sure that their rights are being followed and that their service plans are being implemented the way they want them implemented. All too often kids are you know either shuttled into a career direction based upon those low expectations without the young person ever even expressing what they wanna do. Secondly, I think it’s really important that families support their young people. Connect with other adults with disabilities so you can see what’s possible in the centers for Independent Living are a great opportunity to do that. I think when a parent is able to see the potential of their kid and see beyond the limitations that the world often places on them that parent can become a really important ally in breaking barriers down and in helping the young person develop the sense of self esteem, self confidence and what we would call a rights bearing attitude. So, all of those things are really important and then when you when it gets to the time where other kids are starting to think about college or what they’re gonna do afterwards. I think its really important that young people with disabilities, push to get all those after school activities to build up their resume so to speak. You know to do a student internship, to volunteer, to get a job for the summer that’s how people without disabilities do it and all too often our young people haven’t been given those same opportunities. We have to insist upon them. Then I think it’s pursue your dreams decide what it is you wanna do. Heavily research it see if you can find some other people with disabilities who are doing it so that you can ask them how they manage it. So, for example the doctor that you mention there are quite a few doctors now in the U.S. with disabilities so helping connect people to successful role models. I think is really important.

Alvaro Gutierrez: Now, another question in this case for our listeners maybe a complicated one. But, I think it’s important and you talk about it and how much in the beginning. When that person that offer you the opportunity to work again as a nurse called you and you said “No, I’m not able to work.” I wanna talk that out because some people with disabilities because of their emotional situations they are facing after acquiring this disability. Mentally, feel that they are less able than they are and it happens to many people. Many people I know Marca I talk to and I say, “Are you working?” and they say “Naa, I am blind I’m not able to work” and I say “oh that is not correct, you are ready to work”. So I

Marca Bristo: Yeah

Alvaro Gutierrez: So, more than a question Marca. Is I wonder in your opinion how can we push our selves to be able to get out of the house and say look I may have a disability but I am more able than I need to believe. I need to push

Marca Bristo: Yeah, it’s a really important question, really good important. If you read particularly feminism literature there’s something called internalization of oppression. It’s when you take all the stereotypes that society has towards a particular group and you internalize them yourself. So that you are essentially discriminating against yourself, you are denying yourself the opportunity because you are buying the stereotypes that the society at large has placed on you. The only way I know to challenge that is to get out in the world and try. To learn what your rights are number one and it’s you know you may fail but everybody. That’s how people get strong right, trial and error. All too often we’re not given the dignity of risks you know we are over protective from trying things. So I think we gotta call it like it is and when somebody says that I think it’s really important to try if at all possible to have a mentor. Also, with a disability who can push them and say no it doesn’t have to be a disable person. In my case when that supervisor said, “why don’t you come on in?” it was her encouragement that got me over it. Right? It didn’t take a lot of effort. It just took her believing in me. The other thing that I will say is that the whole system of (inaudible) for disabled people built into our public policies so in America for example, if you go on social security disability or SSI. There’s limitations on your ability to work and a lot of people are rightfully afraid. Well, what if I try to work and I’m not successful at it. Then I’ll lose my benefit or I’ll lose my health insurance. We’ve begun to whittle away at some of those policies to develop trial work periods or to make it just a little easier for people to get back on. If they’ve tried and it hasn’t worked and now of course with the Affordable Care Act, people are not it’s depended upon Medicare and medicade as we use to be when we were blatantly discriminated against by insurance companies. So now people don’t have that obstacle you know if they lose their health benefits by being on SSI or SSDI. Then get a job, either the employer will provide it or they can get it on the exchange. So little by little I think we’re beginning to take apart those barriers. But there’s still a lot of work to do.

Alvaro Gutierrez: You were talking about the importance of advocacy. Can you tell us about it?

Marca Bristo: Well, you know in America we have a long production of civil disobedience, civil rights, protest, activism, and I know many of us hang on to former leaders quotes and one that resonates for me in this context is Fredrick Douglas who said, “power concedes nothing without demand it never has and it never will”. So I feel like not being happy with your life because of something external to you that should be a good impetus to get involved and when you do get involved. Something it changes you instead of feeling inferior or cant when you see someone get involved with advocacy with others. Number one the comradery being part of something much greater than yourself and then when you have a victory. You’ll begin to feel your power and disable people have felt powerless for most of our, you know must of humanity and it’s really tremendous. When you see something that you helped changed it lifts you and it makes you wanna do more. It makes you feel proud of yourself so you know the self-pity and the way in which some people get trapped by depression or self-pity. This kind of action it serves right in service to others, takes us outside of ourselves and I think lifts us up in a spiritual way.

Alvaro Gutierrez: I don’t have this as a question . . . But I need to ask. Do you do any motivational speaking?

Marca Bristo: Not really I do public speaking it’s usually more on topics you know like right now for example because we’re at the 25th anniversary of the American Disabilities Act myself and friends like me all over the country are being asked to speak to people about that or when we were working on health reform I might get invited to speak about that. But

Alvaro Gutierrez: You could do

Marca Bristo: I’m not so big on the motivational speaker thing because so much of the time it separates people. It makes people think they’re so much different because you know many of us just hate being considered it quote on quote inspirational because really many of us are being you know getting up in the morning going to work. That should not be inspirational just because we do that, you know what I mean.

Alvaro Gutierrez: I do I really do. But I think the way you see life and experiences that you have found many people that you have met may be voted something for all of us to understand what is possible that’s all I’m saying. But, I understand closer to you. I know time is running out but I have to two more questions. What is the most rewarding part of the work you do everyday?

Marca Bristo: Okay, I think I have two answers. One is watching people’s lives change you know the go to come here in particular the folks who we’re helping get out of nursing home. When they come here at first and then they’re so down trotted don’t have a lot of self-confidence and then fast-forward. You know after they gone on the journey gotten out living on their own and now they’re showing up for other stuff getting involved and just seeing the change in their spirit. It’s very rewarding and the other thing is I guess I would say is watching and helping other leaders grow you know seeing just I think those would be the two things.

Alvaro Gutierrez: Marca, you have been mentioning the ADA and my question to you is the ADA can do what it can do in its way and it’s a leading document and its gonna evolving and everything. But who has the responsibility to make this society full proof because organizations I think they are waking up and they are starting to do a lot of things some because of the pressure of things like the ADA some because of the good causes and good hearts. But should people with disabilities all should do more than they are doing right now. What would you say?

Marca Bristo: So your question, who has the responsibility. For me the answer is simple, everybody. This is not out issue and I’m tired of people making it our issue it’s our society issue and of course that includes us. We as disabled people have a responsibility to push for implementation to learn how the law protects my rights to become a change for our selves. But that’s only a small part of it the rests of society has been an enormous responsibility and it shouldn’t take a loss to cause change and I do believe that as science and technology are allowing babies to be born earlier than more frail than ever before many of whom are want to have life long disabilities and people are not only living into their 80s but their 90s and 100s now and they too are acquiring disabilities. But the numbers of our sheer democratic shifts will demand change. So ideal that our communities as a whole agency for local government, boards, commissions, foundations, businesses, other nonprofit organizations, lawyers, doctors and there isn’t anybody that I can think of that doesn’t have a responsibility. To take a look at what they’re doing in their own wheel or how do they relate to people with disabilities. Do they put up barriers
that they don’t mean to? What can they do to make things more inclusive and open and welcoming?

Alvaro Gutierrez: Then your message for people with disabilities listening. How can we make sure the ADA turn 25 is only the beginning of celebrating at making sure that we are progressing you know inclusion to society.

Marca Bristo: Learn your rights, get involved if there is an area that the law isn’t clearly covering. Right a new law so that it does. So, there’s always new work to be done and I surmise that this next generation is gonna have a whole new (37:00) care if there gonna need to focus on many in the technical universe you know we’ve got a few laws that precare our rights in the technology stage but restore a lot of gaps. So as more and more and more and more comers and social life are depended upon digital and other technological advances. We have to ask are we gonna get left behind again and I think the answer to that is . . .maybe. But it’s not too late for the next generation and those of us who are been around a while to discern what needs to change to prevent that from happening. Thank you very much Alvaro! For inviting me, I really appreciate it and best of luck to you and to all your listeners. I hope whoever is listening will feel compelled to look in their own real house and do something different that will create a more inclusive environment for everybody. Thank you!

Alvaro Gutierrez: Thank you so much Marca! Marca Bristo: And goodbye! Alvaro Gutierrez: Goodbye! And for our listeners remember you can follow us on twitter, you can like us on Facebook, and you can visit our website at www.projectaccessforall and you can email during the show at podcast@projectaccessforall.O-R-G. So from Alvaro from ABS and Project Access For All, thank you so much for listening to the show and have a wonderful day!