{"id":474275,"date":"2021-03-06T04:28:00","date_gmt":"2021-03-06T12:28:00","guid":{"rendered":"https:\/\/disabilityvisibilityproject.com\/?p=474275"},"modified":"2026-02-12T17:19:16","modified_gmt":"2026-02-13T01:19:16","slug":"qa-with-ingrid-tischer","status":"publish","type":"post","link":"https:\/\/disabilityvisibilityproject.com\/2021\/03\/06\/qa-with-ingrid-tischer\/","title":{"rendered":"Q&A with Ingrid Tischer"},"content":{"rendered":"

Below is a conversation I had with my friend Ingrid Tischer<\/a> on February 20, 2021. Ingrid is one of the first close friends I made when I moved to San Francisco over twenty years ago. So we go wayyyyyyy back! <\/span><\/p>\n

Please note there will be discussions of hospitalization, end-of-life, dying and mortality, ableism, quality of life, discrimination, and mental health. Some parts have been condensed and edited for clarity.<\/span><\/p>\n

Many thanks to <\/span>Cheryl Green<\/span><\/a> for transcribing this interview.<\/span><\/p>\n

Audio of the unedited conversation with Ingrid.\u00a0<\/span><\/p>\nhttps:\/\/media.blubrry.com\/disability_visibility\/content.blubrry.com\/disability_visibility\/IngridTischer_2_20_21.mp3<\/a><\/audio>\n

 <\/p>\n

\"First
First day home from the hospital. Ingrid Tischer, middle-aged white woman wearing a Bi-Pap mask in a hospital bed under a colorful quilt.<\/figcaption><\/figure>\n

In the beginning…<\/strong><\/h4>\n

ALICE: Ingrid, thank you for talking with me today.<\/span><\/p>\n

INGRID: Thank you for interviewing me.<\/span><\/p>\n

ALICE: So, Ingrid, why don\u2019t you introduce yourself, just share a little bit about who you are, where you\u2019re based right now, and just anything about your background.<\/span><\/p>\n

INGRID: Well, my name is Ingrid Tischer, as you know. I\u2019m 55 years old. I live in Berkeley, California. I am a cisgender semi-queer married person. And I\u2019ve been working in nonprofits for my whole life, which is about 30 years. I\u2019m currently the <\/span>Development Director<\/span><\/a> for <\/span>Disability Rights Education and Defense Fund<\/span><\/a>, which is the first job I\u2019ve ever had where I can be an activist as much as I am a staff person.<\/span><\/p>\n

I\u2019m also a writer, and I call myself a crip lit writer, which means that I write about characters who are aware of the political dimension of having a disability.<\/span><\/p>\n

ALICE: So, you and I are very old friends, and I was wondering if you could share your memory of when we first met. And how we became friends! Because this is a story worth telling!<\/span><\/p>\n

INGRID: [laughs] OK. I can remember when we first met. What I can\u2019t remember is what year it was. [chuckles]<\/span><\/p>\n

ALICE: Me either, me either.<\/span><\/p>\n

INGRID: But I do remember the occasion. I remember that you were presenting statistics regarding the quality of healthcare for women with disabilities, I believe, with your research partner from UCSF.<\/span><\/p>\n

ALICE: Mmhmm.<\/span><\/p>\n

INGRID: And you were doing it with a woman, I believe, by the name of Leslie Wolf.<\/span><\/p>\n

ALICE: Mmhmm.<\/span><\/p>\n

INGRID: And I was there in the audience, and I was so to see you providing the testimony for some reason. Part of it was that your data was really good. But there was something about the way you were talking that really grabbed me as somebody I would wanna know. So, of course, I had to offer my unsolicited feedback to the data. And I think I was leaving in the parking lot when I believe your mother got me, came up to me, and said that you wanted to say hello. And I think that was how it started.<\/span><\/p>\n

ALICE: That\u2019s funny because I thought my mom and I were at a caf\u00e9 near the parking lot, or it might\u2019ve been on a street in Sacramento. \u2018Cause I mean, I had to eat something before we drove back. I thought we came across you at the parking lot or sidewalk, and then you approached me\u2014<\/span><\/p>\n

INGRID: Oh, my god!<\/span><\/p>\n

ALICE: \u2014introduced yourself. But either way, I recognized you in the audience. So, I\u2019m like, oh, hey. There\u2019s that person. Because I remember during the panel, hearing you mentioned you were from San Francisco, and I was like, another disabled person from San Francisco!<\/span><\/p>\n

INGRID: [laughs]<\/span><\/p>\n

ALICE: And that\u2019s when I was excited. Because I was like, let\u2019s connect! And you know how these things happen for like, sometimes you connect with people. You say you\u2019ll connect with them, but you don\u2019t.<\/span><\/p>\n

INGRID: Yeah.<\/span><\/p>\n

ALICE: And I\u2019m so glad that we bumped into each other because otherwise, who knows when our paths would cross again?<\/span><\/p>\n

INGRID: I can\u2019t believe my unchecked ego had you coming up to me and instead of me coming up to you. [laughs]<\/span><\/p>\n

ALICE: Well, you know, it might\u2019ve happened. This is a <\/span>Rashomon moment<\/span><\/a>, right? Each of our narratives are valid.<\/span><\/p>\n

INGRID: [still laughing]<\/span><\/p>\n

ALICE: And they\u2019re all part of the larger story. But in the end, here we are 20+ years later, girl!<\/span><\/p>\n

INGRID: We\u2019re gonna have to get your mother to answer this final question. [laughs]<\/span><\/p>\n

ALICE: She\u2019ll be like, \u201cWhatever.\u201d<\/span><\/p>\n

INGRID: Well, however it happened, thank goodness it did.<\/span><\/p>\n

ALICE: Yeah. You\u2019re one of my oldest friends and I think somebody I\u2019ve known in San Francisco since, I mean one of the people I\u2019ve been friends with since I moved to San Francisco, like, somebody I met in the very early years, who I\u2019ve remained friends with, which is pretty amazing.<\/span><\/p>\n

INGRID: I think you\u2019re my first friend, my own age-ish, who also has muscular dystrophy ever.<\/span><\/p>\n

ALICE: Mm. That\u2019s pretty special.<\/span><\/p>\n

INGRID: Aw.<\/span><\/p>\n

ALICE: So special.<\/span><\/p>\n

INGRID: I always say we\u2019re two half-people who make a whole<\/a>.<\/span><\/p>\n

ALICE: Jerry [Lewis]<\/a> will be smiling up from heaven!<\/span><\/p>\n

INGRID: [laughs]<\/span><\/p>\n

ALICE: Not!<\/span><\/p>\n

INGRID: I hope he\u2019s sweating somewhere very hot right now.<\/span><\/p>\n

ALICE: Exactly. That\u2019s what\u2019s happening.<\/span><\/p>\n

On Ingrid\u2019s recent hospitalization<\/b><\/h4>\n

ALICE: So, today, this has been almost a full year of the pandemic since the Bay Area went under shelter-in-place orders in March of 2020. And for a lot of disabled people, you know, going to the hospital, going to the doctor is very risky. Could you tell us your story about what happened to you recently and just kind of how it first started?<\/span><\/p>\n

INGRID: What I remember most clearly is that one time around last summer, we\u2019ll say June, July, I noticed that my feet were becoming extremely swollen. And they\u2019d been a little bit swollen for a long time, but this was different. And I also noticed that I was becoming less interested in even trying to leave the apartment or go outdoors, and it was just easier to stay at my desk, keep working for most of the time or try to, and ignore the outside world a lot. And at that point, I stopped walking, you know. I stopped walking even as little as I had been around the house. So, over the next couple months, I told my doctor, eventually, and he recommended compression socks and elevating my feet.<\/span><\/p>\n

He was concerned, but he felt like it was more of a concern that I not come in to be seen given the risk of COVID. And he was good. I mean, I felt like he had a good handle on things, but nothing was really working with my feet. And I would say probably from September onward, I was sliding into a depression\/anxiety that I just kept shoving off to the side, mostly because I had a lot of work to do, and it was getting harder and harder to get things done. And I was just trying to enjoy whatever little things I could. And I also thought that it was kind of normal that this might be happening, given that I had been living inside a small space, unable to go to my workplace and see my friends and family. And frankly, most people I knew seemed to be having, from the outside, a much harder time than I was. So, I kept thinking that I was handling things OK.<\/span><\/p>\n

However, in late December 2020, I started feeling kind of unwell, and I just thought it was being tired from work. And walking was getting extremely difficult even, it seemed to be, in the apartment. And I usually use a Rollator walker, but even that was getting tough. So, in early, very early January, I fell in the apartment when I got out of bed, which was a huge sort of wake up call. And then a couple of days later in the morning, again, when I got out of bed, I suddenly couldn\u2019t really stand up, which for me was a new thing. So, Ken, my husband, and I had to make a really scary decision to go to the E.R. at Kaiser, which for me was like going into a very dangerous place. And at that point, to be very blunt, I couldn\u2019t even get to the toilet. So, I didn\u2019t really see any safe way to remain at home.<\/span><\/p>\n

So, I spent an entire day in the E.R. I was taken by ambulance. Everyone was wonderful. And at one point being in the E.R. when I had to have a BiPAP put on because I use a BiPAP, they had to take me in the area of the emergency room where all the COVID patients are, and that was like entering a different, an entirely different realm. But I just sort of managed it. Everybody was very professional. And probably about 1:30 that night, I was finally admitted to an acute care floor for people with neurological issues. And I was eventually diagnosed as having asymptomatic pneumonia, probably related to being so sedentary that some fluid accumulated in one of my lungs. So, I was given antibiotics. I was also given a diuretic called Lasix to get the fluid out of my body because they were worried about the swelling. And while I was in the hospital, a couple of days later, that I had what I now know was a panic attack, and I was having very severe anxiety.<\/span><\/p>\n

On anxiety and panic attacks<\/b><\/h4>\n

ALICE: So, for people who\u2019ve never experienced a panic attack, are you willing to share kind of that sensation, what precipitated that panic attack, and kind of what happened afterward?\u00a0<\/span><\/p>\n

INGRID: Well, I had, of course, seen a lot of doctors for very short increments of time while I was there, and some of the doctors were so much better than a lot of doctors I\u2019ve seen in my life. A lot of the younger ones are pretty disability-conscious, I think, in a way. Even if they don\u2019t know everything they\u2019re aware of what ableism is. But I saw what I think of as a more old-school doctor was a neurologist. And neurologists are usually the doctors I feel pretty comfortable with. I wasn\u2019t really up on my guard. And I was in bed, again, having trouble breathing because I had pneumonia. Very, very physically weak and pretty debilitated emotionally, because I was having such severe anxiety about going home or not going home and what my future was. And there was a question of whether I could go into what they call acute rehab, which sounded actually like a great option for me. Because I thought that with some intensive work, a lot of my muscle strength could be regained, and I\u2019ve never had access to something like that before. And they were telling me, this doctor was telling me, that I wasn\u2019t suitable for it because I would never regain my original baseline before I went in.<\/span><\/p>\n

And so, what that means in, of course, medical-ese is I would never be as strong as I had been before I went in. And what they wanted to use their acute care rehab for was, for example, a person who had been in a car accident and had a traumatic brain injury or a person who had a stroke: somebody who they felt quote-unquote \u201ccould get better.\u201d So, I was pretty upset by what he was saying. And I said to him\u2014and my husband was sitting there taking notes\u2014 I said, \u201cYou know, well, wouldn\u2019t that preclude anybody who has a progressive or degenerative condition? Because none of us are going to do that.\u201d And he seemed a little irritated. But then he said, \u201cWell,\u201d he said, \u201cwell, you know, you\u2019ve always known this was coming.\u201d And then he just kind of gestured toward my body and said, \u201cI mean, look at you.\u201d And at that point, I think what happens is that unfortunately, I think he was echoing what was in my head in a way that I really hated. We didn\u2019t really know what to do. And I checked out kind of. And I was pissed off, but I was also defeated in a way that I\u2019m not normally.<\/span><\/p>\n

My husband was nice, and we talked about it. But then he left. And in the next day or so, that\u2019s when I had a panic attack. And I didn\u2019t experience it as like, \u201cOh, I am now going to have a panic attack. I\u2019m feeling very anxious.\u201d I wasn\u2019t even thinking about anything at the time. It came up out of my gut like a wave, like a tidal wave, and all I felt was that something was taking over. And I thought it was a disease process at that point or an allergic reaction to a medication that I had been given. Because it started right after they had put something in my IV. And my blood pressure went up to like over 220, which for me is unusual. And I felt these waves of forceful heat coming up and over me, and all I can say is it felt like panic. And I thought I was, I thought it was death sort of showing up.<\/span><\/p>\n

They kept assuring me there was nothing wrong with me. And they asked me if I wanted a medication that I had never heard of. And I said, \u201cWhat\u2019s it for?\u201d And they said, \u201cWell, it\u2019s for nerve pain.\u201d And I said, \u201cI don\u2019t have nerve pain.\u201d So, I turned again. And it went on all night long. It started at 5:35 in the evening, \u2018cause I looked at the clock, and it went on 15-minute cycles of building up, building up, building up, subsiding, and then starting. And I talked to my morning nurse the next day who was fantastic, and he was horrified. He said, \u201cWhy didn\u2019t they give you any of the gabapentin?\u201d That was the drug. And I said, \u201cI don\u2019t know what that is.\u201d And he said, \u201cIt\u2019s for breakthrough anxiety.\u201d And I was like, \u201cI didn\u2019t know that.\u201d So, he gave me one, and it was hugely helpful.<\/span><\/p>\n

Also, Kaiser did connect me with a psychiatrist while I was there who was very, very good. And when she talked to me, she actually said, \u201cYou know, I want you to know that I don\u2019t regard what you\u2019re going through as necessarily a component of your disability. I wanna treat you like you\u2019re a whole person because you are.\u201d And when I described all the anxiety I had about aging with a disability, having a spouse who\u2019s older than I am who I really depend on, the fear around finances. She\u2019s like, \u201cYou know, I think you have a lot to worry about. Let\u2019s get you some help.\u201d And she asked me if I\u2019d be willing to try medication. And when I was like, \u201cSure,\u201d she\u2019s like, \u201cOh! You\u2019re OK with that?\u201d And she said, \u201cWhy are you,\u201d you know, I\u2019m interested, \u201cwhy are you so open to that?\u201d And I said, \u201cBecause I used to have oxygen deprivation, and I didn\u2019t understand how that was affecting my mood, among other things. And the day that I got the BiPAP that I woke up with it, it was like my whole quality of life completely changed. But I hadn\u2019t known that beforehand. So, maybe medication will be like that for me.\u201d And she was pleased to hear me say that. So, I\u2019ve been on medication since then.<\/span><\/p>\n

On the devaluation of disabled lives<\/b><\/h4>\n

ALICE: So, I wanna go back a little bit about what this neurologist said to you. Because I think this is one of the deepest fears that disabled people have in terms of really, people being very explicit about how they see us and how they see our quality of life and how those views can actually play out in <\/span>lesser care, denial of care<\/span><\/a>, and <\/span>rationing of care<\/span><\/a>, which is already happening, you know, before the pandemic and now during the pandemic. This is a form of terror that we face all time, whether we\u2019re gonna be institutionalized forever or whether we will just be left to fend for ourselves because we\u2019re just not worth \u201cit\u201d anymore. Did you ever feel like while you were in Kaiser that you were in danger in terms of the future, in terms of recovering? Did you feel like you were gonna recover, or did you feel like that was in doubt? Because I think that\u2019s every time I\u2019m in the hospital, I get that feeling like, \u201cOh shit. Is this the time? Is this the time, and am I ever gonna get out?\u201d<\/span><\/p>\n

INGRID: I would say I came a lot closer to that, and I was there briefly. I feel very fortunate in that most of my hospital experiences in my life haven\u2019t been what I\u2019d call traumatic. It may\u2019ve been painful because they were physically painful. But I didn\u2019t come out of them feeling any sense of trauma. In this case, what happened was that I was rejected for the acute care rehab, I thought, based on the criteria that were described to me. And I was also told that I wasn\u2019t eligible to go to a skilled nursing facility of any kind, which is really kind of a mixed feeling because I didn\u2019t wanna go. I was terrified of going to one because they often don\u2019t have good reputations for care and because of COVID. But to feel like, wait a minute. Why did you reject me for any skilled nursing facility? And I\u2019m still not quite clear why.<\/span><\/p>\n

But when the neurologist said that to me, what happened was that the following day, my husband again came to visit, fortunately, because we were on the phone with my colleagues at <\/span>DREDF<\/span><\/a>, my legal colleagues at DREDF, trying to get the lay of the land on what <\/span>his rights were<\/span><\/a> in terms of visiting me and stuff. And that worked well. And we were also kind of telling them in real time what was going on. And they were horrified, and they were ready to sort of help us whatever way was possible, which did make me feel a lot better, believe me. But my first thought was like, my God, what if I didn\u2019t happen to be working at DREDF and know people like this personally? The thing that happened was the next day, Ken came to see me\u2014and this is still hard to say\u2014but I felt such a desolation, like such a sense of what I now just refer to as what\u2019s the point-ism, that I wanted him to know that if I started breaking down, that I wanted to go home because I wanted to die now. And I want you to understand that everything in my life up to this point has been, my reaction to all that has been, please throw the medical kitchen sink at me to keep me alive. That\u2019s what I want. That\u2019s what\u2019s in my Advance Directive. That\u2019s the sworn. I\u2019m like, I\u2019m fine being kept alive artificially in the future because I\u2019m being kept artificially alive right now.<\/span><\/p>\n

ALICE: Cyborgs! Cyborgs! [laughs]<\/span><\/p>\n

INGRID: Well, you know, come on. Everybody\u2019s being kept alive artificially.<\/span><\/p>\n

ALICE: Yeah.<\/span><\/p>\n

On vulnerability, aging, and the future<\/b><\/h4>\n

INGRID: You know? I mean, money does not actually grow out of plants, you know? Among many other things. So, for me to say that to him, it was like I was starting to say goodbye, like, for real. And that happened in the span of 24 hours to a disability rights activist who knows what her rights are, who is not coming from a really, you know, a harsh background. But the thing that scared me was that there was simply not gonna be a good place for me to age into. And that, for me, that\u2019s a new thing. And I\u2019ve always maintained that my <\/span>opposition to assisted suicide legislation<\/span><\/a> is about opposition to legislation. It\u2019s not opposition to individual people\u2019s decision to end their lives because that\u2019s their path, and that\u2019s not my place to question it. But this was the first time that I\u2019ve personally been on that path. And it just underscored for me my belief that the biggest problem we face is a justified lack of trust and faith in our healthcare system.<\/span><\/p>\n

ALICE: Yeah, there\u2019s so many things the way the system is constructed that make us feel like we don\u2019t have a choice. And this is not to take away what people want, but also, there are very clear circumstances and structures and beliefs that contribute to this feeling, that contribute to decisions that we make. All of these things can\u2019t be separated.<\/span><\/p>\n

INGRID: I mean, the whole tone that I got from the neurologist was kind of the most basic kind of judgment. And I really felt like, look what you\u2019ve let happen to yourself. And you think we can fix that? And that\u2019s the thing where I realized how much of my whole life, going back to being a tiny, tiny kid, was then about feeling that I need to present a face to the world that says, oh, I feel like I\u2019m OK. I\u2019m OK. And to an extent, I think I know why I did that. Because for me to give an inch would mean that the whole game is up. Like, if I dare say I\u2019m not OK today, it\u2019ll be taken as a well, you\u2019re just completely shot to shit. You\u2019re shot to hell.<\/span><\/p>\n

ALICE: And I also think there\u2019s this double edge, right? Like you are, a disability rights activist, and that somehow, we can\u2019t have these scary feelings, and we can\u2019t go against these political positions or opposition to things that are ableist, even though in our day-to-day lives, it\u2019s a little bit more complicated, right? And there\u2019s that outward-facing fuck you, ableism, fuck you, society kinda stance. But then there\u2019s also the very real vulnerability. And people talk about vulnerability. They praise people who are being vulnerable and honest but oftentimes they really don\u2019t want to see the uncomfortable and very difficult side of vulnerability, right?\u00a0\u00a0<\/span><\/p>\n

INGRID: Well, yeah.<\/span><\/p>\n

ALICE: When it\u2019s not when it\u2019s not this nice, neat narrative about loving yourself or empowering yourself. You know, vulnerability can be very painful, and people, a lot of those people don\u2019t wanna hear that kind of vulnerability. What\u2019s your sense of, I guess, how you felt and just how you processed it and where you are now?<\/span><\/p>\n

INGRID: Well, first of all, I wanna say I totally agree with you about vulnerability. And I think it\u2019s like disability itself: People think it\u2019s great when it\u2019s anybody but themselves, while it\u2019s anybody with them. And it kinda goes out the window the minute somebody starts feeling like, oh, I\u2019m not like that. I\u2019m OK. I\u2019m not like that. And \u201clike that\u201d is general catchall phrase for whatever it is that you would never, ever wanna be for some reason. And the way that I feel now is not, at least intellectually, I\u2019ve accepted that and seen that…part of being disabled is accepting that I am not actually OK 100% of the time, 100%. And that in my own way, I\u2019m embarrassed to say that I\u2019ve bought into something I don\u2019t agree with at all! Which is the whole thing about how the, all the, the mindset that says, \u201cOh, I\u2019m not really disabled. I may have trouble doing blah, blah, but I\u2019m disabled,\u201d you know?<\/span><\/p>\n

I have a disability. My body is not like other people\u2019s. It has a neuromuscular disease that is progressing. My neuropathy is getting worse, my myopathy is getting worse, my respiratory capacity is getting worse. None of that is a social construct. That\u2019s just my physical reality. And I\u2019m really at the place of saying, of being very impatient with anybody who suggests that that physical reality doesn\u2019t create its own set of living circumstances. That really is not under my control. It\u2019s not a narrative that I can just write away. And I think that now is how I show respect to my body is how I also respect myself, by not pretending that my disability isn\u2019t going to affect my emotional life in a very real way. And that part of that is that there are gonna be times when I\u2019m not OK with my disability.<\/span><\/p>\n

ALICE: Yeah, and I think this is a constant tension people work towards. I mean, sometimes, people try to suppress it for sure and deny it and internalize it, but it\u2019s also something that we constantly kind of sometimes work through or just constantly try to process and adjust. Since you are somebody who is thinking about the future, \u2018cause there is, I think, a lot of people like us where our future is not all that pleasant in a lot of ways. I mean, it\u2019s not going to be some sort of Baby Boomer golden years. A lot of us are freaked out about how we\u2019re gonna live our last years and where we\u2019re gonna live because so many of us are living in poverty, or near poverty and needing to rely on other people for our everyday activities.<\/span><\/p>\n

So, you are recovering at home right now and getting services and help that\u2019s made a big difference. What do you, not that you have stabilized, what are your current, I guess, concerns about what comes next for you? Or are you not even thinking about that?<\/span><\/p>\n

INGRID: It\u2019s really, it is something I just don\u2019t think about. Having some psychiatric medication in my system, that works for me. Having the kind of trustworthy daily help that I get from my husband sort of around the clock gives me a huge advantage in recovery emotionally as well as physically and lets me sort of focus on what can I do right now to get myself better than I was? But the longer-term stuff that\u2019s been hanging over my head now for about 5 to 10 years is still really there. And I\u2019m currently waiting for my talk therapy to start in March. A lot of people need therapy right now, so there\u2019s been a bit of waitlist for that, but I\u2019m gonna get it. And I think that that\u2019s just gonna be a process. And the thing is, [sighs] I\u2019m gonna have to kind of make it up as I go. I mean, you know as well as I do that you and I don\u2019t have a lot of role models to look at or even roadmaps to follow for the next 20 to hopefully 30 years of our lives. And I don\u2019t want them to be 30 years of misery or fear. And it seems like that\u2019s the most common narrative.<\/span><\/p>\n

And COVID has made that worse because I know that in the back of my mind, I\u2019ve been trying to get comfortable with the idea of, at some point, transitioning into like an assisted living facility. And now, my sense of, well, is that really a safe place to go is suddenly kind of up in the air. And I gotta say there\u2019s like\u2014 I don\u2019t know if you know this, but there\u2019s a new movie available, I think, on Netflix called <\/span>I Care a Lot<\/span><\/i> <\/a>that\u2019s really about elder abuse and stuff. And I started watching like five minutes of it, and I\u2019m like, I can\u2019t even watch this. This is like they think it\u2019s a satire, but it\u2019s real life.<\/span><\/p>\n

ALICE: Yep.<\/span><\/p>\n

INGRID: And I can\u2019t watch. I can\u2019t call it entertainment right now.<\/span><\/p>\n

On internalized ableism, asking for help, unlearning capitalism, and the need for rest<\/b><\/h4>\n

ALICE: I wanna ask you one last question as we wrap up. Earlier, you talked about how one of the things that kind of delayed your care is your own sense that other disabled people have it worse than you. And I feel like this is something that is very toxic that we do to ourselves all the time, thinking that we\u2019re not worthy of care or help, even though we say we\u2019re all interdependent. But we do sometimes look at our community and think, \u201cOh, my gosh. I have so much privilege. How dare I take up this space or take up resources when other people are having it much harder?\u201d<\/span><\/p>\n

INGRID: Yeah.<\/span><\/p>\n

ALICE: Because I think this is much more common than people wanna talk about. For people who might be in a similar situation that you were in last fall, what would you say to them if they are debating right now whether to seek help? If in their gut they feel like they know they need help, but also wonder whether they are disabled or worthy enough to ask for help in comparison to their friends. What\u2019s your advice?<\/span><\/p>\n

INGRID: Well, I think my advice is to err on the side of physical caution or psychiatric caution, too. It\u2019s OK to lean on your medical provider for medical care in a way that they will provide it. I mean, what I mean by that is what I noticed in the hospital was that I was getting all kinds of medical care that I needed for a long time. But until I was inpatient, there was no way for me to access it. And it took a crisis for me to get it. So, in a way, I don\u2019t want to encourage anyone to sort of look at everything as a crisis. But Kaiser was really clear with me. They told me when they were planning for my discharge, that I needed to understand that being in the hospital means that they\u2019re going to be providing medical stability, and they\u2019ll do whatever they have to do to provide that. When you go home, that\u2019s not what they do. And that meant to me that I had to get every single thing I could out of being in their particular part of the system before I left. And by the time I left, they had set me up with more in-home equipment, more in-home healthcare, and more follow-up than I\u2019ve ever gotten in my whole life, except maybe for once when I had my spinal fusion surgery at 13.<\/span><\/p>\n

The other thing is that [sighs] it\u2019s not right, but our system is just not set up to deal with people in their homes, period. Which is really wrong. I tried maybe 15 years ago with my doctor in San Francisco to get in-home physical therapy that I really needed, and he could never get it approved. And I couldn\u2019t get into the outpatient physical therapy, so I never got it. So, I\u2019m making the most of the in-home stuff that I\u2019ve got right now, because I don\u2019t know when I\u2019ll have it again.<\/span><\/p>\n

ALICE: Yeah, \u2018cause it won\u2019t last. It\u2019s for a certain period of time, right?<\/span><\/p>\n

INGRID: Yeah. And I would say the only thing I can say is it\u2019s much better to say flat-out that you\u2019re not doing OK when you\u2019re not than to keep insisting to yourself that it will get better when it may not of its own accord. I mean, being able to say, \u201cNo, I\u2019m not OK\u201d in our particular world, that\u2019s actually a pretty ballsy or bold statement. And I know that not everybody gets the same reaction from medical providers when they say that. I am a middle-aged white woman who speaks English, and if I\u2019m having trouble getting people to help me, I can only imagine what a Black woman or another person of color or a person with linguistic access problems is gonna deal with like for pain medication.<\/span><\/p>\n

But I still think it\u2019s better always too, to have, if you can, a family member or friend to be as present as possible to push back on things. Because I know at times I\u2019m not my best advocate, my own self-advocate, and I\u2019m fortunate in that I have a spouse who is very good at advocating for me and for other people.<\/span><\/p>\n

So, even if you feel like, oh, I\u2019m OK, listen to the person you trust in your life who says to you, \u201cYou know what? I think you really need to see the doctor.\u201d \u2018Cause they can\u2014<\/span><\/p>\n

ALICE: Or somebody else who can do something since not everyone trusts health care providers.<\/span><\/p>\n

INGRID: Yeah, right.<\/span><\/p>\n

ALICE: You just need help. \u2018Cause there\u2019s so many people who don\u2019t have doctors.<\/span><\/p>\n

INGRID: Exactly. Whoever can help.If you need help getting food into your home or a ride to some sort of appointment or some place that you need to be, if somebody remarks to you like that they think you could use some help, generally, you can trust, you know, if you trust them, you can trust that they\u2019re seeing something in you that\u2019s not shameful, that\u2019s not wrong, but it\u2019s something that you can feel and allow to happen.<\/span><\/p>\n

ALICE: Yeah, because I think sometimes, people like us, where our autonomy is important, that the act of getting help or saying things are not OK, it\u2019s sometimes almost a threat to our autonomy or personhood. And I think that\u2019s part of the reason why people are reluctant, right? This is a shameful thing, when it shouldn\u2019t be shameful.\u00a0<\/span><\/p>\n

INGRID: Especially around mental health.<\/span><\/p>\n

ALICE: Absolutely. And I think this is why sometimes things slowly accumulate and get to a crisis level where it doesn\u2019t really have to get to that place if we trust our bodies and people around us.<\/span><\/p>\n

INGRID: The other thing that\u2019s been really bizarre to me that I just realized in talking to you is I haven\u2019t worked in six weeks. And I don\u2019t even know when the last time was in my life. It\u2019s been a really long time since that, and I\u2019ve been feeling really guilty-adjacent. It\u2019s more like I\u2019ve lost a piece of I think I am, and I\u2019m just having to trust that it will come back. But I do feel, I feel very odd when I see all the work that\u2019s going on right now, and I see my friends like you enjoying incredibly well-deserved accomplishments. And I think like, am I done with that? Can I get back to that? Because right now, it doesn\u2019t feel like I know how. But I realize, oh, I have a disability.<\/span><\/p>\n

ALICE: It\u2019s OK, yeah.<\/span><\/p>\n

INGRID: Yeah.<\/span><\/p>\n

ALICE: You know, also, one of the things that\u2019s so basic but is so true is that we have to take care of ourselves first before we do anything else. And sometimes that\u2019s gonna be a suspension of everything we\u2019ve done previously, and sometimes, we don\u2019t know how long that\u2019s gonna take.<\/span><\/p>\n

INGRID: Like you know, I know you know intellectually like I do, a human being has worth independent of a paid job. It still kinda gets me in my gut once in a while. Like it kinda bypasses my mind and that fear that I\u2019m not an acknowledged human being, if I\u2019m not getting to my job every day and contributing productively to my society, do I really exist?<\/span><\/p>\n

ALICE: Oh, capitalism!<\/span><\/p>\n

INGRID: Yeah! But, you know, it\u2019s more than that though. It\u2019s like it\u2019s being part of a community or being part of, you know, being part of a world that, suddenly, I\u2019m not in at this particular moment.<\/span><\/p>\n

ALICE: Yeah.<\/span><\/p>\n

INGRID: It\u2019s disconcerting.<\/span><\/p>\n

ALICE: So, Ingrid, is there anything else you\u2019d like to share as we wrap up this interview?<\/span><\/p>\n

INGRID: Let\u2019s see. Well, I\u2019ll just say, I guess I\u2019m thinking saying \u201cI\u2019m not all right, that I\u2019m not OK,\u201d is an act of self-care in and of itself. And that\u2019s probably the only bit of service I can give to the community right now, but, so, I\u2019m saying I\u2019m not really OK right now, but I\u2019m working on getting better and feeling more OK. And it\u2019s good that people have space and support to do that.<\/span><\/p>\n

ALICE: Ingrid, thank you so much for trusting me with your story and being super real and honest with me and just allowing me to share your truth with the world. Because I think these are stories that are shared privately between people and where we help each other but there are many people who don’t have close friends. They don\u2019t have those trusted people. And this story, hopefully will help them for those who don\u2019t have their trusted buddies.<\/span><\/p>\n

INGRID: Well, you\u2019re a trusted buddy. You\u2019re a trusted co-conspirator. I always like that title for you.<\/span><\/p>\n

ALICE: Thank you. I salute you!\u00a0<\/span><\/p>\n

INGRID: [laughs] Thanks, Alice.<\/span><\/p>\n

ABOUT\u00a0<\/b><\/h3>\n
\"Five
Five weeks later. The same woman, Ingrid Tischer in a cloth mask and shoe orthotics sitting outside in a transport chair on a ramp in the sun.<\/figcaption><\/figure>\n

Ingrid Tischer<\/b> has been a Bay Area writer, non-profit professional, and disability rights activist with a focus on access to funding for over 25 years. Changing the narrative around disability from charity to equity is a constant in her funding and communications work, and in her writing about ableism on her blog <\/span>Tales From the Crip<\/span><\/a>. She joined Disability Rights Education and Defense Fund (DREDF) in 2011 as their Director of Development and more recently became a Trustee for the <\/span>Awesome Foundation Disability Chapter<\/span><\/a>, a disability-led, disability-centered micro-grant-making group. She recently launched the <\/span>Disabled in Development Project (DiD)<\/span><\/a>, a story-telling outlet for disabled people in philanthropy, and held the 1st Annual Nap-a-thon for Disability Rights Advocacy.<\/span><\/p>\n

 <\/p>\n

Twitter: <\/span>@IngridTischer<\/span><\/a>\u00a0<\/span><\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

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