For people with invisible disabilities, getting accommodations involves a ‘constant calculus’
Disability advocates from across Minnesota gathered at the Capitol Wednesday for Disability Advocacy Day. People with disabilities as well as caretakers and community members were there. That includes people affected by PTSD, autoimmune disorders and severe mental illnesses, which can all be disabling without being immediately apparent.
The extra step of disclosing a disability can prevent people from getting the care and accommodations they need. Trevor Turner, public policy director of the Minnesota Council on Disability, joined MPR News host Cathy Wurzer to talk about what it’s like to live with a disability that isn’t obvious to others.
Use the audio player above to listen to the full conversation.
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Audio transcript
CATHY WURZER: Today at the Capitol, pretty busy day at the Capitol. Disability advocates from across Minnesota are gathering for Disability Advocacy Day. Folks with disabilities, as well as caregivers and community members, will be there. However, it's important to remember on days like this that disabilities are not always visible. PTSD, autoimmune disorders, several severe mental illnesses and more can all be disabling, yet most people would not be aware of the disability without the person disclosing it. This adds a crucial extra step that can prevent people with invisible disabilities from getting the care they need.
Here to talk about what it's like to live with an invisible disability is Trevor Turner. Trevor is the Public Policy Director for the Minnesota Council on Disability Thanks for joining us, Trevor.
TREVOR TURNER: Thank you, Cathy. How are you.
CATHY WURZER: I'm fine Thanks for-- thanks for being here. Did I get the definition right of invisible disability?
TREVOR TURNER: Yeah, absolutely. I think most invisible disabilities are going to be things that just are not apparent when you're looking at someone. Every day, you just may not see it, but they might be living with it. Me particularly, I have a condition called Usher Syndrome, which manifests itself as deaf-blindness, but my blindness is not always apparent, and that can be a struggle sometimes.
CATHY WURZER: Can you share what that's like for you?
TREVOR TURNER: Yeah. For me, I often describe it as-- I'm also a gay man, as well. And I tell people that oftentimes you have to come out of the closet, so to speak, every day with your non-apparent disability. Because you have to make that calculus when you're talking to someone, will my disability make them think less or more of me, or will they make assumptions about what I can and cannot do? And so I'm always making that calculus in my brain when I meet new people, and just trying to decide how much I disclose about my disability.
CATHY WURZER: Oh, that's got to be exhausting.
TREVOR TURNER: Yeah.
CATHY WURZER: I'm wondering, do we know how many people like yourself live with invisible disabilities in Minnesota?
TREVOR TURNER: Yeah. So I looked it up and I think they estimate about 70% to 80% of disabilities are considered invisible disabilities. In Minnesota, we have about 20% of the state is identified with a disability. So obviously, it's probably roughly 70% of that. But one of the challenges with finding a number for invisible disabilities is just it's a matter of self-disclosure. And so oftentimes, many people don't necessarily want to disclose that they have a disability. So it really depends on how the data was collected. And so that really depends on whether someone wants to identify as someone with a disability, especially if they have an invisible disability.
CATHY WURZER: I wonder, then, does that affect someone's quality of care receiving accommodations for that invisible disability?
TREVOR TURNER: Yeah, absolutely. With accommodations, like you said, because you may not-- it may not be obvious that you have a disability, that sometimes employers may not think that actually need that accommodation. And so that can be really challenging, trying to convince people that you are, in fact, someone with a disability and you need accommodations and are entitled to them under the ADA, just like any other disability. But it can just be a real challenge just trying to remind people that you have the disability.
CATHY WURZER: Do you have to prove that you have a disability in order to get, say, a disabled parking sticker or just those basic parts of life?
TREVOR TURNER: Yeah. Oftentimes, any time you are required to provide documentation of a disability.
CATHY WURZER: Yes.
TREVOR TURNER: So there's definitely with disability parking, Department of Public Safety, you do submit a form that has the doctor's signature on it, saying that you do have a disability, things like that. And yeah, oftentimes you have to disclose your disability in order to-- and show what it is in order to get services and accommodation that you need.
CATHY WURZER: Mhm. So I mentioned the rally at the Capitol today. Any bills this session that you think would-- you're hoping will pass when it comes to folks who are living with invisible disabilities?
TREVOR TURNER: Yeah, absolutely. I'm actually at the Capitol right now. I was fortunate enough to find a quiet space to be able to do this, but I will be returning back to the rally later. But one bill that I'm really looking forward to is called the Minnesota Rise Act. It has been heard in every committee and will be included in the higher education omnibus bills. But this bill basically standardizes and requires that institutions of higher education be more communicative with students with disabilities, especially those with invisible disabilities. So I'm really hoping that it will help people with invisible disabilities in college be able to get the accommodations they need to finish their coursework and get their degrees. Because the number one reason most people-- students with disabilities drop out of college or don't finish their degrees is because they aren't able to get the accommodation they need to do it.
CATHY WURZER: I'm wondering, too, there is that bill moving through the legislature dealing with Uber and Lyft, rideshare companies. With all the latest news on what's happening in Minneapolis, and I know a lot of my friends who are living with a disability use Uber and Lyft, and don't use Metro Mobility to fill those gaps. I'm wondering where you stand on this situation and are you a fan of having more of a statewide solution to this?
TREVOR TURNER: Yeah, absolutely. And the Council on Disability has been working behind the scenes with the Governor's office and the state legislature to find a solution and get more people more accommodations for people with disabilities and Uber and Lyft. Because the reality is, taxis are required by the Americans with Disabilities Act to have wheelchair accessible vehicle. But because Uber and Lyft are not considered a taxi company-- they're considered a technology company-- they're exempt from those ADA requirements. And so because the state does not have any kind of wheelchair-accessible vehicle minimums for Uber and Lyft, then they actually don't provide wheelchair accessible vehicles. So if you're a wheelchair user, Uber and Lyft is not a service you can use.
And so we are really trying to push for that, because obviously Uber and Lyft are saying that-- are concerned about people with disabilities like myself. As a blind person, I don't drive. I use Uber and Lyft quite often. However, I would say it's unfair for Uber and Lyft to say that they are caring about disabilities when they often exclude so many people with disabilities who are wheelchair users from their service. So I hope that this conversation with Uber and Lyft will provide better accessibility in their apps in the future.
CATHY WURZER: And I'm going to assume that you might be a little worried about them pulling out of the Twin Cities, or at least the threat of them pulling out, because so many folks like yourself use the rideshare companies.
TREVOR TURNER: Yeah, obviously it will dramatically impact my quality of life to be able to not use Uber and Lyft. And Metro Mobility, unfortunately, is not considered an on-demand taxi service. You have to schedule those several days in advance. And oftentimes, the window, the wait times are several hours. And so it's really not an adequate replacement for Uber and Lyft. Obviously, I would support more funding and support for Metro Mobility, so that it could increase those. But obviously, they're working with what they have. But without Uber and Lyft, there will be definitely pain among people who rely on it.
CATHY WURZER: So Trevor, before you go here, question. Folks who are listening might not know how to interact with a person with an invisible disability because you just don't know, right? So what can folks do to be more inclusive of individuals with invisible disabilities?
TREVOR TURNER: I think the best thing you can do is just not to assume. The Down Syndrome organizations have had a really great campaign recently that, assumed that I can and maybe I will. And I really like that campaign because there's often so many assumptions about disabilities. And I think that don't want to assume just because someone has a certain disability.
For me, particularly with my vision, I do have enough vision to still be able to use a smartphone, watch TV, and stuff like that, With some accessible accessibility features turned on for that. But I think oftentimes when people see me with my cane and then see me using my smartphone, they get confused. And so I think that's the biggest thing you can do is just not to assume the abilities of somebody with a disability.
CATHY WURZER: All right. I know you have things to do here today at the State Capitol. I appreciate your time. Thank you so much.
TREVOR TURNER: Thank you, Cathy.
CATHY WURZER: Trevor Turner is the Public Policy Director for the Minnesota Council on Disability.
Here to talk about what it's like to live with an invisible disability is Trevor Turner. Trevor is the Public Policy Director for the Minnesota Council on Disability Thanks for joining us, Trevor.
TREVOR TURNER: Thank you, Cathy. How are you.
CATHY WURZER: I'm fine Thanks for-- thanks for being here. Did I get the definition right of invisible disability?
TREVOR TURNER: Yeah, absolutely. I think most invisible disabilities are going to be things that just are not apparent when you're looking at someone. Every day, you just may not see it, but they might be living with it. Me particularly, I have a condition called Usher Syndrome, which manifests itself as deaf-blindness, but my blindness is not always apparent, and that can be a struggle sometimes.
CATHY WURZER: Can you share what that's like for you?
TREVOR TURNER: Yeah. For me, I often describe it as-- I'm also a gay man, as well. And I tell people that oftentimes you have to come out of the closet, so to speak, every day with your non-apparent disability. Because you have to make that calculus when you're talking to someone, will my disability make them think less or more of me, or will they make assumptions about what I can and cannot do? And so I'm always making that calculus in my brain when I meet new people, and just trying to decide how much I disclose about my disability.
CATHY WURZER: Oh, that's got to be exhausting.
TREVOR TURNER: Yeah.
CATHY WURZER: I'm wondering, do we know how many people like yourself live with invisible disabilities in Minnesota?
TREVOR TURNER: Yeah. So I looked it up and I think they estimate about 70% to 80% of disabilities are considered invisible disabilities. In Minnesota, we have about 20% of the state is identified with a disability. So obviously, it's probably roughly 70% of that. But one of the challenges with finding a number for invisible disabilities is just it's a matter of self-disclosure. And so oftentimes, many people don't necessarily want to disclose that they have a disability. So it really depends on how the data was collected. And so that really depends on whether someone wants to identify as someone with a disability, especially if they have an invisible disability.
CATHY WURZER: I wonder, then, does that affect someone's quality of care receiving accommodations for that invisible disability?
TREVOR TURNER: Yeah, absolutely. With accommodations, like you said, because you may not-- it may not be obvious that you have a disability, that sometimes employers may not think that actually need that accommodation. And so that can be really challenging, trying to convince people that you are, in fact, someone with a disability and you need accommodations and are entitled to them under the ADA, just like any other disability. But it can just be a real challenge just trying to remind people that you have the disability.
CATHY WURZER: Do you have to prove that you have a disability in order to get, say, a disabled parking sticker or just those basic parts of life?
TREVOR TURNER: Yeah. Oftentimes, any time you are required to provide documentation of a disability.
CATHY WURZER: Yes.
TREVOR TURNER: So there's definitely with disability parking, Department of Public Safety, you do submit a form that has the doctor's signature on it, saying that you do have a disability, things like that. And yeah, oftentimes you have to disclose your disability in order to-- and show what it is in order to get services and accommodation that you need.
CATHY WURZER: Mhm. So I mentioned the rally at the Capitol today. Any bills this session that you think would-- you're hoping will pass when it comes to folks who are living with invisible disabilities?
TREVOR TURNER: Yeah, absolutely. I'm actually at the Capitol right now. I was fortunate enough to find a quiet space to be able to do this, but I will be returning back to the rally later. But one bill that I'm really looking forward to is called the Minnesota Rise Act. It has been heard in every committee and will be included in the higher education omnibus bills. But this bill basically standardizes and requires that institutions of higher education be more communicative with students with disabilities, especially those with invisible disabilities. So I'm really hoping that it will help people with invisible disabilities in college be able to get the accommodations they need to finish their coursework and get their degrees. Because the number one reason most people-- students with disabilities drop out of college or don't finish their degrees is because they aren't able to get the accommodation they need to do it.
CATHY WURZER: I'm wondering, too, there is that bill moving through the legislature dealing with Uber and Lyft, rideshare companies. With all the latest news on what's happening in Minneapolis, and I know a lot of my friends who are living with a disability use Uber and Lyft, and don't use Metro Mobility to fill those gaps. I'm wondering where you stand on this situation and are you a fan of having more of a statewide solution to this?
TREVOR TURNER: Yeah, absolutely. And the Council on Disability has been working behind the scenes with the Governor's office and the state legislature to find a solution and get more people more accommodations for people with disabilities and Uber and Lyft. Because the reality is, taxis are required by the Americans with Disabilities Act to have wheelchair accessible vehicle. But because Uber and Lyft are not considered a taxi company-- they're considered a technology company-- they're exempt from those ADA requirements. And so because the state does not have any kind of wheelchair-accessible vehicle minimums for Uber and Lyft, then they actually don't provide wheelchair accessible vehicles. So if you're a wheelchair user, Uber and Lyft is not a service you can use.
And so we are really trying to push for that, because obviously Uber and Lyft are saying that-- are concerned about people with disabilities like myself. As a blind person, I don't drive. I use Uber and Lyft quite often. However, I would say it's unfair for Uber and Lyft to say that they are caring about disabilities when they often exclude so many people with disabilities who are wheelchair users from their service. So I hope that this conversation with Uber and Lyft will provide better accessibility in their apps in the future.
CATHY WURZER: And I'm going to assume that you might be a little worried about them pulling out of the Twin Cities, or at least the threat of them pulling out, because so many folks like yourself use the rideshare companies.
TREVOR TURNER: Yeah, obviously it will dramatically impact my quality of life to be able to not use Uber and Lyft. And Metro Mobility, unfortunately, is not considered an on-demand taxi service. You have to schedule those several days in advance. And oftentimes, the window, the wait times are several hours. And so it's really not an adequate replacement for Uber and Lyft. Obviously, I would support more funding and support for Metro Mobility, so that it could increase those. But obviously, they're working with what they have. But without Uber and Lyft, there will be definitely pain among people who rely on it.
CATHY WURZER: So Trevor, before you go here, question. Folks who are listening might not know how to interact with a person with an invisible disability because you just don't know, right? So what can folks do to be more inclusive of individuals with invisible disabilities?
TREVOR TURNER: I think the best thing you can do is just not to assume. The Down Syndrome organizations have had a really great campaign recently that, assumed that I can and maybe I will. And I really like that campaign because there's often so many assumptions about disabilities. And I think that don't want to assume just because someone has a certain disability.
For me, particularly with my vision, I do have enough vision to still be able to use a smartphone, watch TV, and stuff like that, With some accessible accessibility features turned on for that. But I think oftentimes when people see me with my cane and then see me using my smartphone, they get confused. And so I think that's the biggest thing you can do is just not to assume the abilities of somebody with a disability.
CATHY WURZER: All right. I know you have things to do here today at the State Capitol. I appreciate your time. Thank you so much.
TREVOR TURNER: Thank you, Cathy.
CATHY WURZER: Trevor Turner is the Public Policy Director for the Minnesota Council on Disability.
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