IAP 2018-E5: Interview with Director of MABVI

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Mark chats with Sassy Outwater-Wright, director of the Massachusetts Association for the Blind and Visually Impaired. They discuss such topics as the need to support people with multiple disabilities and the right way to approach a conversation focusing on the concerns of people with disabilities. Sassy talks about the mission of MABVI and how it impacts the lives of the visually impaired people it supports.

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Massachusetts Association for the Blind and Visually Impaired

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Interview with Director of MABVI

Transcript by CastingWords
[background music]
Announcer: Welcome to the IAP, the Interactive Accessibility Podcast. Bringing you the people, technology, and ideas helping to make your world accessible to everyone.
Mark Miller: Hello, and welcome to the IAP. I'm your host, Mark Miller, thanking you for helping us keep it accessible. Do us a favor. If you're enjoying the IAP, share it. Tell someone about it. Even link to it from your accessible website.

 

Hey, guys. Welcome. I'm here today with a special guest, Sassy Outwater-Wright. She's director for Massachusetts Association for the Blind and Visually Impaired. She herself is blind.

I'm interested, Sassy, to talk to you about this. I guess introduce yourself a little bit. I'd love to hear as the Director of the Massachusetts Association for the Blind and Visually Impaired what you're doing and what exactly the organization is doing.

Sassy Outwater-Wright: Thank you so much for having me. I'd be happy to do that. First, around here just among friends, we call it MABVI.
Mark: MABVI. [laughs]
Sassy: Massachusetts Association for the Blind and Visually Impaired. I can roll that off my tongue because I do it every day. For those in the know, we just call it MABVI.
Mark: MABVI. I love it. It sounds so much more dangerous.

 

[laughter]

Sassy: Yeah, a lot easier. Yes, we are dangerous because we are light on our feet. A little bit about me and then a little bit about MABVI. I lost my sight as a young child due to retinoblastoma, which is a rare cancer of the eyes. I am totally blind and have been for a very long time.

 

My background is in both disability advocacy, digital accessibility and assistive technology.

I specialize in intersectionality. The intersections between having multiple disabilities, usually vision loss plus some additional disability, the use to assistive technology and the impact it has on our daily lives. I specialized in studying that intersectionality for women with multiple disabilities.

For example, access to health care, how to access print information when you are in a crisis like a rape crisis situation or a domestic violence situation, housing and support during domestic violence, shopping and fashion for women or those who identify non-binary but need female health care assistance. Because there were a lot of gaps in digital accessibility and print access information accessibility for women with multiple disabilities and just vision loss in general.

That was my background and how I got into this. Part of the multiple disability factor was age-related vision loss. MABVI really specializes in...we are nonprofit and we serve the entire state of Massachusetts. We primarily serve seniors who are aging into vision loss.

We are available to serve anyone from point of diagnosis of an eye disease all the way through to total blindness. We serve anywhere from 20/40 which is classically considered low vision. Which is where doctors start restricting your driver's license. We serve from there all the way through.

We find that the majority of people we serve since Massachusetts is very lucky and we have a lot of agencies that serve the legally blind, we wind up serving those who are heading toward that or just ensuring that. We deal a lot with adjustment to vision loss.

We have occupational therapy rehabilitation for low vision clients. We have assistive technology training programs that specialize in teaching people with multiple disabilities including age and other health conditions. We specialize in orientation mobility for people with vision loss plus mental disabilities or acquired brain injury.

We fill in the gaps that nobody else really touches in the state providing adjustment counseling services in mental health services and support groups for people so that they have some support if they get the trauma diagnosis of vision loss.

Mark: You said a lot there, but one of the...
Sassy: I did.

 

[laughter]

Mark: I know, which is great. It sounds like you guys do a lot. I think you said it you're filling in a lot of gaps that may not be filled in by other organizations or other government funded things.

 

One of the things that was really interesting, in the beginning, you talked about how you guys work with people especially women who have multiple disabilities.

Being in the industry that I'm in, I've obviously met a lot of people with multiple disabilities, but until you started really talking about it just now, I don't know that I've ever really thought about how that would compound some of the challenges that people may have.

Is it one disability plus another disability? Are the difficulties greater than just the sum of those two disabilities? What kind of things are people really facing when the disabilities start to compound like that when they only have one?

Sassy: Health care access is a perfect example. If you think about what generally happens when you walk in for a doctor's appointment, generally you get passed a form through a window. Somebody with vision loss might warn their doctor's office ahead of time, "Can you email me the forms?" or "Can I go online to fill out the patient intake forms?"

 

Somebody who has cognitive decline due to age, or somebody who has traumatic brain injury, or somebody who has an intellectual disability may not know or may not remember that they need to do that, so they get to the doctor's office, they find that the person behind the desk is not willing to give them the form in an accessible format.

For most of us, we can self-advocate well enough to say, "Well, I'm not going to have some stranger in the waiting room fill this out with me."

For somebody who's 85 and maybe is not recognizing that having an absolute stranger have your social security number and other private health care information is against so many good ideas. It's not against the law, technically. They wouldn't know that. They might just walk into the waiting room and ask out loud, "Can anybody help me fill this out?"

Somebody starts helping them fill it out now has access to all of their health care information and goes and uses that to have some elder fraud happen. Not a great thing.

Yes, I see a lot that having multiple disabilities really impacts somebody's ability to access health care, access housing, access the basic necessities that we need, including food access. We really don't think about those things until they start to compound, especially when it comes to disability and mental health.

That's a huge one that we're really seeing come forward right now. We don't generally think of digital accessibility or print information access as something that intersects very much with mental health, but when you compound it with another disability, it's a huge factor that we need to keep in mind.

Mark: We deal a lot with the WCAG 2.0 and 2.1 guidelines. One of the things of those guidelines I have always found challenging, I think, is accommodating for people with cognitive disabilities. When you talk about this compounding effect, I can see where that would get even tougher.

 

I hear everything you're saying about people just not remembering that it's not a great idea to share personal information or something along those lines. I wonder if you have somebody that needs significant accommodations and then you compound that disability with a cognitive disability.

If they start to even forget how they need to be accommodated for in the first place, or how to ask for the accommodations they need to just handle this...I'll call it the first. I don't know if it would be the first or the second, but the other disability. Now you're just in this feedback loop that's got to be extremely difficult.

Sassy: It is. I think 2.1 does a really good job of trying to catch that, where they can't add and inserting things like sitemaps, like navigational cues, like clues for usability.

 

They did a lot of revamping on a lot of this, and now we are trying to get people to carry that over into forms that are presented into real-world accessible situations, like health care situations, like law enforcement situations, like shopping experiences, because those little cues go a long way.

We call it common sense inclusivity, but it's really not yet...

Mark: It's tough.
Sassy: ...seen as commonplace common sense. It's still kind of a one-off thing when you get it.
Mark: I think that that's a fantastic point. That's the other side of the coin, isn't it? It's the individual themselves that has to advocate for themselves. They may have a group like you that's helping to advocate.

 

It's also just educating the general public or people who are in service industries, in terms of how to accommodate and how to just deal with and handle people with disabilities.

That common sense piece that you talk about, what's common sense for me, what's common sense for you, may not be common sense for somebody else.

I remember a situation where I have a friend who is in charge of a large manufacturing company.

We were talking about disabilities as I end up in these conversations. It was an individual who was in a wheelchair. He walked into the guy's office one day and just said, "Hey. Just checking on you. Do you have everything you need?" Then he started asking him, "What's this for? What's this for?" The guy [laughs] kept going, "I have no idea. I have no idea. I have no idea."

He said, "Then why are they in here?" He's like, "Well, your company has default things that they give somebody who are in a wheelchair. I honestly don't know what they're for." He said.

"Well, what do you need?" He said, "I need enough room under my desk to slide my wheelchair. That's the only accommodation I need right now."

Just that idea that effective communication with an individual and understanding that may be what you need to do, along with maybe some education on what kind of accommodations people need.

Just learning how to talk with somebody or being comfortable enough to talk with somebody who has a disability just like you would talk to somebody without a disability.

When I walk in without a disability and have great conversations with people all the time. I think sometimes people are intimidated or nervous or just don't understand how to have a productive conversation with a person with a disability. Then compound it. [laughs] It's even more difficult. Do you guys look at that side of it at all, too? You must.

Sassy: Hugely, we do. There are three tools that I use. You know how the medical professional has ABCs, airway, breathing, and circulation...
Mark: Yes.
Sassy: ...that every professional checks off when they see a patient? We have the ABCs of that. Accessibility, brain space, and capacity are the three things that I call it.

 

The checklist that we use whenever we enter an advocacy situation, whether it's a assistive technology training session or a counseling session, these are the three things that I mentally move through in my mind when dealing with a patient. They change. Every single day they're going to change.

I can't assume that what was given to me today is going to be the same tomorrow because disabilities change. They're not static things. I think we tend to forget that in the digital-design space. We'll use assistive technology training as an example.

As we're moving through assistive technology training and they load a website and they're getting ready to interact with that, I use a traffic light as my meter for measurements.

I will say to them, "Red light means this is not accessible to me right now." It doesn't matter if it's accessible to anybody else with a disability. It matters if it's accessible to my client...

Mark: The individual.
Sassy: ...right now because, like macular degeneration, vision will change. The area that is affected by vision loss will change. I need to know right then and there if it is accessible to them. The yellow light on the traffic light represents, "This could be accessible to me if I had some more support" whether it's some more training.

 

Whether it's an advocate to help reach out to the website because there's one thing that's broken, whether it's user error or a bug. Whether they need a different type of assistive technology to access it or just a change in the lighting.

If there is one thing that they can have altered or a few things that they can have altered to better access that experience, then it's a yellow-light experience.

Green light is, "I can totally access this. This is comfortable to me." That is the A, accessibility. B is brain space. When somebody walks into my office, I either say they are uploaded or they are downloaded. My question that I answer for that is, "What can I do to help you right now?" It doesn't have to do with me suggesting things to them.

It doesn't have to do with me defining what tools they have to use to access something. It has to do with me asking them, "What can I provide you to help you?" My answer might have to come back and be, "There is not something that will make that accessible for you right now." At least I didn't start the conversation by defining their disability to them.

I started the conversation with allowing them to define to me and self-advocate for what they need and teaching them that self-advocacy tool. By upload and download, I mean brain space.

If a brain is preoccupied or stressed out by an inaccessible experience maybe they just had or a discomforting thought about their disability or they are stressed, they're not going to be a good candidate for learning something new today in assistive technology until they unburden and they have a chance to talk through what's bugging them.

C is capacity. Are they in a capacity where they can learn right now, or do they need to go through some adjustment talk first, some learning about self-advocacy, and some feeling better about their situation? Disability onset is a traumatic process. It's laden with grief, rage, fear. I need to be respectful and mindful of that.

Whether I am a developer, a designer, I'm a teacher, an advocate, or any person who is coming into contact with somebody with a disability, I need to be mindful of their trauma, respectful of it, and open-minded enough to listen to where they are in their capacity today to deal with that.

Those are the ABCs that I use at any point in time when dealing with a client to make sure that I'm in the right brain space to deal with them, and they're in the right space to deal with the accessibility options I'm going through with them.

Mark: I absolutely love that. It seems to me like one of those things that maybe every K-12 teacher should [laughs] also pay attention to.
Sassy: One piece that struck me in your last comment, sorry to interrupt, was...
Mark: That's OK. Go ahead.
Sassy: One thing that struck me that I made note of was the gaps. The way that our system in the US at least is structured is going through K-12, you have a DA. You have an IEP. You have a team that is there dealing with your disability as a child. You have your parents. You have your itinerant teachers, etc.

 

Once you age out of that and you graduate, boom. You're out on your own. Self-advocacy is your only way of getting access to things...

Mark: That's a great point.
Sassy: ...until you kick into the voc-rehab system. Then it's luck of the draw. If you get a good case manager, you've got at least one person on your side. If you don't, you're even worse off. Then, once you age out of the voc-rehab system, you age into social rehabilitation. Funding drops dramatically. You're back out on your own again with that self-advocacy thing.

 

We have two gaps in care right now that we really see needs some additional support. That is, aging out of K-12 and into whether it's college, trade school, or a job. Then aging out of the voc-rehab space and into a social-rehabilitation space and the seniors that are beginning to be the more prevalent population that is going to provision us.

Mark: The brilliant simplicity in that ABC model is that it really is something that probably applies to everyone one degree or another and that a person with a disability probably just has an amplified need for somebody to take those considerations that you outlined.

 

Which I think goes back to the beginning of our conversation where we're talking about common sense.

There is a lot of common sense, and if you know what you know about human beings in general and you just expand that out, what we know about asking people what they need, what you can do to help them out.

In my job all the time I get a phone call from my boss and he says, "Is there you need from me to help you do your job better?" It's just taking a simple concept like that, that works for the general public and expanding it to work for people with disabilities.

That seems to me, with this brilliant ABC concept you have here...I say this from the perspective of somebody who, I have ADHD and I had challenges in school very much so.

Then, in the workplace afterward. Everything that you just said in a small way applies to my experience with ADHD. One of the things that stuck out is that if you're in a place where you're stressed, you don't have capacity to take on more information or to deal with something.

That's true for anyone, but for me, it was more true because of my ADHD. I think just looking at how things expand out when somebody has an additional challenge, whether it'd be a cognitive challenge like I have, or something like vision loss, or a mobility challenge or whatever it is. It's an additional challenge. It's going to expand upon that.

I think that's brilliant. I think that what you just said in its simplicity is really where the brilliance is.

Sassy: It's based on neurodiversity. Whether it be mental health, emotional health, cognitive health it's based on neurodiversity. Our brains don't work the same way.

 

I identify as neuroatypical. I have had brain tumors and I have epilepsy. For me, and I have been around the [laughs] blind work and the disability world long enough to see some of the internal and systemic ableism that goes on.

When I was designing this model I took a lot of inspiration from Autistics who have done a beautiful job of activism in saying, "Don't define me. Let me define myself for you and to you. Always give me that driver's seat to guide my own experience.

"Even if I'm not being the best self-advocate right now because I can't be, give me the control. I still know what I need and want." If I can put respect of somebody's autonomy first in everything I do, and not present them how I perceive their brains to work but let them tell me how they work, then I'm being the best advocate for them and with them that I can be.

That's the whole goal of this model, is to take my presumptions and perceptions of somebody else's brain out of the equation and let their brain do the driving. It's their brain I have to work with.

Mark: I heard a person with a cognitive disability, they were on the Autistic spectrum, but they were in this really interesting space where they're very aware of their disability but it was still pretty severe for them.

 

It's just incredibly interesting to listen to this person talk. One of the ways they put it is, don't disable me with your environment. If you create an environment in which I can operate, I'm fine.

Sassy: Kind of the quintessential model of the social model of the disability, absolutely.
Mark: Listen, we've got to wrap up. We have limited time here in this podcast. I feel like you and I can keep talking. I'm looking at your bio and there's so many more interesting things.

 

Maybe we should continue this in another podcast at some time.

Sassy: Absolutely.
Mark: Obviously, we really appreciate what you do and your position as director of, what did you call it? What was the acronym? How did you pronounce it?
Sassy: MABVI.
Mark: MABVI. That is totally awesome. I really also just appreciate your perspective overall because these are the kind of discussions that, as somebody who works with people with disabilities, that expand my thinking.

 

I would like to sit here and think that I have a pretty expanded thinking because of what I do. But I'm not even probably half close to where I could be. Just hearing you talk about that ABC and just a lot of the experiences and ways you guys are helping people with disabilities really makes me think about things differently.

Thank you for that. I consider that to be a bit of a gift that I got today at this podcast. I really appreciate your time.

Sassy: Anytime. Thank you for having me.
Mark: Thanks for doing what you do. Maybe we will have you back on again and we can take a different tract in the conversation. I'd love to hear more about what you do and what you've learned through your experience.
Sassy: You know where to find me. We are in the process of revamping our websites, so please come visit us at MABVI.org if you have any questions.
Mark: Beautiful. We'll make sure we put that in the call notes for people too. If you didn't have a chance to write it down, it'll be there for you.

 

Thank you very much. This is Mark Miller, thanking Sassy Outwater-Wright and Marissa for producing the show. Thanking you guys for listening and reminding you to keep it accessible.

[background music]

Announcer: The AIP Interactive Accessibility Podcast is brought to you by Interactive Accessibility. The accessibility experts. You can find their access matters blog at InteractiveAccessability.com/blog.

 

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