Notice: Undefined offset: 2 in /home/nsip/serviceandinclusion.org/htdocs/index.php on line 12
NSIP -

National Service and Inclusion Project

Inclusion: The active engagement of people with disabilities as service members in all levels of national and community service
NEXTSTEP logo

Visit NSIP's sister site The National Service to Employment Project (NextSTEP)


UMass ICI

Photo of Sofia Maneschi

Participants: Sofia Maneschi

Program: Center for Independent Living of Middle Tennessee (AmeriCorps*VISTA)
Service: Grant writer


Interview with Sofia Maneschi, February, 2001

TOPICS:

  1. INTRODUCTION
  2. SERVICE 1
  3. SERVICE 2
  4. REASONABLE ACCOMMODATIONS
  5. ADVICE TO PROGRAMS
  6. DISABILITY AWARENESS 1
  7. DISABILITY AWARENESS 2

1. INTRODUCTION:              real audio clip icon

SOFIA MANESCHI: My name is Sofia Maneschi. I am 25 years old and was born and raised in Nashville, Tennessee. I went to Tufts University in Boston and I majored in psychology and German. My mother was German and she raised me speaking German…I feel like I’ve spent a lot of time getting used to my disability. It hit at a strange time when most people are figuring out what they want to do with their lives. And I had to figure that out too, but I was also trying to think about what’s important and it’s tough when you have trouble getting around. I started working out at a gym, and one of the people who worked there said, "I think you should try out for this Miss Wheelchair Tennessee competition." My first reaction was "No way." I pictured big hair and make-up; and I thought "That’s not me." But he explained to me that it was all about being an advocate for people with disabilities and raising awareness about people with disabilities. After much cajoling I decided to enter and I won in October of 1999. So I was Miss Wheelchair Tennessee 2000 and I feel like it has opened up a lot of doors for me. I was asked to serve on boards and I met a lot of people in the disability community. Actually that is where my current [AmeriCorps*] VISTA position came from. I served on the board for the Center for Independent Living whose mission is to empower people with disabilities to gain their vision of independence. The executive director said "We have a bunch of VISTA positions open; would you be interested in applying for them?" I was actually volunteering at this accessible gym in my neighborhood. I decided to apply because I wasn’t really sure what direction I wanted to go in my life. And now I am a grant writer with the Center for Independent Living which has proven to be very fruitful. It’s been a good growing experience.

2. SERVICE 1:              real audio clip icon

EMILY MILLER: Had you been a grant writer before?

SOFIA MANESCHI: No. I was given a few different options and I chose being a grant writer. It’s strange. I never really liked marketing, and that’s basically what grant writing is; but it’s for such a good cause that I feel good. It’s easy to ask for money for something that you really believe in. I mean these are programs to empower people, and what could be better than that?…We are starting this information technology training program to teach people with disabilities computer skills so they can go out into the work force. We partnered with the Department of Vocational Rehabilitation and they required $36,000 in matching funds. And so I’ve been working on getting those matching funds. I wrote a proposal to the HCA foundation for $10,000, which I got; and I’m working to get the rest.

EMILY MILLER: Is it a fulltime position?

SOFIA MANESCHI: It is 35 hours a week. It’s funny, with VISTA you are not allowed to say that you are employed because it is technically a volunteer position. But I am working 35 hours a week. It feels like I am employed.

EMILY MILLER: Was the volunteering at the accessible gym the first volunteer position that you’d had?

SOFIA MANESCHI: No. I had volunteered on and off through high school and college. It was always a few hours here and there at organizations that I was interested in.

3. SERVICE 2:              real audio clip icon

EMILY MILLER: What was appealing about becoming a VISTA?

SOFIA MANESCHI: I feel, one of the big things is experience. I kind of felt like I was fresh out of college because I hadn’t had a job, and this is a chance to gain these skills. Grant-writing, that’s a good skill to have, it’s a marketable thing. You can put it on your resume: "Wow, Sofia writes grants!" You’re adding to yourself as a person, and in terms of just gaining all these valuable experiences. The fact that I am going to be teaching people about disability etiquette; I think that’s a very good skill to have. And then, this is what you can contribute to society. Yeah, it’s very much a symbiotic relationship: you’re helping your community, and it in turn is helping you to kind of build yourself. I guess that’s the main thing.

4. REASONABLE ACCOMMODATIONS:            real audio clip icon

EMILY MILLER: I usually ask people about whether they identified and asked for reasonable accommodations but this doesn’t really apply in your case, does it?

SOFIA MANESCHI: This organization is obviously very much geared towards people with disabilities. They did have to make a few accommodations for me which they were very eager to do and did very quickly and easily.

EMILY MILLER: For people who don’t have a lot of experience with disabilities, can you describe the process: what the necessary reasonable accommodations were, and how you went about doing that with your supervisor.

SOFIA MANESCHI: I feel that it was very accessible physically in terms of ramps and widths of doorways…oh, I just remembered I was very shocked the first day to find that the toilet was not accessible. They, of course, were very eager to change that and were very accommodating. I actually looked into getting a new toilet. They would have done it but I figured since the toilet was basically for me… So I chose one that I wanted.

EMILY MILLER: So it was simply bringing the bathroom up to ADA standards? Do you remember the cost of that accommodation?

SOFIA MANESCHI: Oh it was maybe $100 or so.

EMILY MILLER: It was simply a matter of choosing an accessible toilet and replacing it?

SOFIA MANESCHI: It was very simple and actually one of the guys who works at the center for independent living had experience doing plumbing so he replaced it. It was a very easy issue, and I guess in general, most accommodations are relatively cheap or they cost very little. For my boss, he needs a higher desk so his desk is propped up; it has a wooden base a few of inches higher.

Multiple Sclerosis is a degenerative disease and so since the beginning my manual dexterity has declined and so my typing is now very slow. And my boss got for me something called "Dragon Dictate" that allows you to speak into a microphone and the computer types text. It translates what you say into text on the screen. That was also a very inexpensive accommodation but it makes my life so much easier.

EMILY MILLER: were there any other reasonable accommodations?

SOFIA MANESCHI: With my MS, I tend to get very fatigued in the afternoons especially, and so I was worried about my stamina working seven-hour days. When I was volunteering before this I would volunteer three days a week for maybe four hours a day and so I was very worried about my stamina At the beginning, my boss said, "If need be we can arrange work for you to do at home." So that was a very nice option; it’s one that I haven’t taken yet because I have been able to work full days but just knowing that if I need to I can take work home I think that’s a great thing.

EMILY MILLER: Reasonable accommodation will look different in different situations. Because MS is a progressive disease, Reasonable accommodations may not be a one-time thing.

SOFIA MANESCHI: Right. I feel like its going to keep changing.

5. ADVICE TO PROGRAMS:              real audio clip icon

EMILY MILLER: So what do you feel like you need from a program coordinator or a supervisor?

SOFIA MANESCHI: I feel like the ball is in my court in terms of saying what I need. Although, we are starting this Information Technology Training Initiative. This is a class for people with disabilities teaching them how to use computers, and the teacher mentioned to me that I might want to be evaluated. There’s a center that evaluates people with disabilities and offers suggestions about might make it easier for them.

EMILY MILLER: Different kinds of assistive technology?

SOFIA MANESCHI: Yeah, because you don’t know everything that’s out there. So I might do that.

EMILY MILLER: So would you say that the programs coordinator should know that reasonable accommodations are subject to change, and that what you might need in the beginning of a term may be different from what you need in the middle or the end?

SOFIA MANESCHI: You know I feel like that might be a scary thing for a supervisor. But you come up with accommodations…

EMILY MILLER: Let’s say I’m interviewing someone and they tell me that they have MS. And I am in a situation where I am feeling uneasy because I think they might need some help with something; and I don’t know, and I don’t know how to approach them; do you have suggestions if someone wants to know if an accommodation is necessary?

SOFIA MANESCHI: I think it’s so important to keep those lines of communication open and very often people without disabilities are hesitant to broach the subject. Nashville is getting its first art museum and they have asked the Center for Independent living to do a seminar on disability etiquette for their volunteers. I am really looking forward to teaching people that it is okay to ask what you’re allowed to ask. It’s important to remember that people are people. Although some people don’t like to be asked about their disability, most people are very open about it in general. So I feel that it is okay to ask and it’s good to ask. And once you get it out into the open and make it an okay subject to talk about, it’s very refreshing.

6. DISABILITY AWARENESS 1:              real audio clip icon

EMILY MILLER: Are there ways that you have been asked about your disability that have been negative for you? Are there things that you tell people not to do?

SOFIA MANESCHI: There are always things. At work, everything has been fine. But in the community in general I could give you numerous examples of things not to do. One time I was in a restaurant with a friend of mine, and the waitress said to my friend, "What does she want?" It’s like, "Hello! I can speak for myself." There’s a very good video called "The Ten Commandments of Communicating with people with Disabilities."

…Its so funny just because I work in the disability community and there are a couple of different disability organizations in the building I work in, and we have a pamphlet on interacting with people with disabilities. And one time I was in the someone’s office and one of the people who works in one of the other office came in he was leaning on my chair and I said, "Have you read the pamphlet on interacting with people with disabilities?" And he said, "yeah." And I said, "What does it say about personal space?" He jumped back, and I was just joking I didn’t care.

EMILY MILLER: I think people are scared of saying the wrong thing. They feel like they can read the book and know how to deal with every situation and every individual. And I’m sure that working in an environment where there are people with all kinds of disabilities, probably there is some disagreement.

SOFIA MANESCHI: Yeah. And even I am sometimes unsure about how to interact with someone. In terms of speech impediments I very often have a difficult time understanding what people are saying. I am thinking specifically about someone with Cerebral Palsy. And you are supposed to ask until you understand what they are trying to say and never pretend that you understand. And I remember one time I couldn’t understand and I had to ask about three times, and I felt like an idiot. And it’s important not to feel stupid and incompetent.

EMILY MILLER: Would you say that the majority of your experience in the world was interacting with people without disabilities?

SOFIA MANESCHI: Very much so. It was interesting, when I first became disabled I was seeing a psychologist at the time. I asked her, "I don’t know how people view me." And she said, "Well, how did you view people in wheelchairs before you became disabled?" and I couldn’t remember. I always wondered what people were thinking when they saw me in a wheelchair.

7. DISABILITY AWARENESS 2:              

EMILY MILLER: Is there anything else that you’d like to say about yourself?

SOFIA MANESCHI: It’s interesting to think about someone listening in to this, and it just presents me as a very static character. It’s like my whole life is disability.

I recently joined a toast masters club and I did it on the recommendation of coworkers…I gave my first speech last week. It’s called the "icebreaker speech," and that’s where you introduce yourself. You know my wheelchair is the first thing you see and for me it’s an afterthought; I sometimes forget about it. Wheelchair user stereotyped but it’s not really that big of a part of my life. I really enjoy doing pottery and I enjoy painting and reading. Hey, I’m a person. I’m not a diagnosis.

click to return to top of page



Website and contents © Institute for Community Inclusion. All rights reserved. Call us at (617) 287-4300 TTY: (617) 287-4350

©The National Service Inclusion Project (NSIP) is a training and technical assistance provider on disability inclusion. NSIP partners with the Association on University Centers on Disability, National Council on Independent Living, Association on Higher Education and Disability and National Down Syndrome Congress to build connections between disability organizations and all CNCS grantees, including national directs, to increase the participation of people with disabilities in national service.