38 Comments

I became disabled 4 years ago. I have an invisible disability, that when it flares up, makes it hard to walk, talk or eat. I think even my church friends struggle to understand how I can be perfectly fine one day and unable to talk the next. It’s incredibly isolating and makes it hard to even commit to church activities — how will I know if I’ll be able to run around with the kids on Sunday school that day? How do I know if I’ll have the energy to contribute to that potluck? Humans like categories: you’re either able or disabled. Those of us in that grey zone are misunderstood. I don’t often tell others about my disability, but when I do, it’s very meaningful when they do some research and seek to understand. Over the years a few of my friends have learned to ask how my energy levels are before planning an activity and that means the world.

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Thank you for speaking up about this. I think I’m on the “misunderstanding friends” side of this and your story is helping me get over my judgments and be more loving.

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There’s nothing like a convent to teach you about the beauty of intergenerational living, with all the disabilities & interdependences that come with that. I’m not always on the young, able-bodied side of the equation, either - knowing that my sisters will understand & accommodate me on my sick days, no questions asked, has made it a lot easier to TAKE those sick days when I need them.

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As an occupational therapist, I interacted with people with disabilities daily in a hospital environment. I grew up playing sports with a friend with Down syndrome and visiting my grandma who struggled with Parkinson’s disease my whole life. I loved focusing on their passions and abilities (my friend loved tending to those injured and my grandma loved dancing) and I think that perspective on disability led to a career in OT. I’m taking a hiatus from that work now to raise my young family and though I don’t see people with disabilities daily, but when I do it’s in the community at church, baseball games, on the street, in parks. From my line of work, I may be more sensitive at spotting the differences than others - a man with the huge parietal scar, the toddler with bilateral ankle-foot orthoses or the young woman with mild CP. I think these differences are more prevalent than we think

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One of my kids (ASD) does OT, PT, and speech therapy weekly, and those waiting rooms are where I see true diversity in families and kids across a whole spectrum of physical limitations and developmental challenges. Even though I may not ever have a full conversation with most of them, I feel the most understood there as a special needs parent just knowing I am not alone in a very manifest way. It’s often hard to recognize disabled people elsewhere because they’re not a large share of the church/school population. But everyone has challenges at the therapy office. I’m constantly in awe of the occupational therapists at that office and how skilled they are, both on a professional and human level.

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As a disabled adult, thank you for your work! I love my medical team and how they help me be a stronger advocate for myself in the world.

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I have been blind since birth. Leah, you should come to a disability-related conference sometime if you can, and if you haven't already; I personally think the most representative is the CSUN assistive technology conference, which is about far more than what it sounds like. This year I ended up in a lot of converssations about culture and even one about theology/Christian philosophy, which was interrupted when a sighted colleague of the person I was talking to got us a chance to meet Stevie Wonder!

I would also recommend the book Country of the Blind by Andrew Leland, which is a great overview of current blind culture in the US. When I was in my 20s I largely took a long break from the blind community, but ended up working in blindness services and came to appreciate how a common attribute like that allows people from very different backgrounds to become close.

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I loved Leland’s book!

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I'm glad you have gotten to read it. I believe he mentions Carter Sneed, which I wasn't expecting!

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Jul 26Edited

Something nice about working at an open-admissions community college (that is, if you have a high school diploma or an equivalent like a GED, you're accepted, basically no other questions asked) is that we get people from a whole lot of walks of life. It does mean making very deliberate choices about things like course prerequisites, textbook selections, etc., because there are fewer assumptions you can make ahead of time about what people will walk into, say, First-Year Experience Seminar already able to do (are they reading at college level, a little below, a lot below? How many are concurrently taking intermediate or advanced ESL courses? Does anyone need a desk that accommodates a wheelchair, or seating where they can read my lips? How many last went to school twenty or more years ago and will need to learn how to navigate a course space in Blackboard/Canvas/etc.? Not all of those things imply disability, of course, but they're diversity that gets taken into account.) In that environment I wouldn't necessarily say I think a lot in terms of *dependence,* but in terms of diversity, honestly, there's more of it than I often notice in our church...but then, I bet our pastor knows more about our congregation's diversity than I do, and he may well have to plan and adjust things accordingly, too, maybe in ways not always obvious to me.

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I’m disabled so…this question isn’t really for me, but I appreciate its being posed to a primarily able-bodied audience. It’s really difficult as a disabled adult to learn to advocate for yourself in a world that’s not made for you, especially when most people are only exposed to disabled children as inspirational stories. I have a whole life—a marriage, multiple degrees, a job, a wonderful community —that’s not most people’s assumption about me.

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Thank you for sharing your story!

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Public transit, but that’s a pretty ephemeral/passing encounter. Just strangers on the same train car.

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Yet, overtime I think when engaged regularly, the ongoing close-proximity begins to shape our sense of ourselves and this world, closing the possible distance between me and them.

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I am the religious coordinator of a special needs religious education program so I teach the faith to people of ALL ages (literally, we have teenagers as well as 65 year olds!) with mostly intellectual disabilities and it is amazing to see their joy while also eye opening to realize their needs. But that is my part time job, my main job is a behavioral therapist for little kiddos who have autism. That too is very very rewarding while also very stressful. I also provide respite for former twin clients who have severe autism. My grandmother had Alzheimer's for 11 years before she passed and my mom was her biggest advocate so I saw her a lot too.

I encounter people with a variety of disabilities in a variety of environments almost 24/7!

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I’m retired from a 35 year career as a speech-language pathologist. I worked in clinical, hospital and public school settings, in a variety of roles including as a manager of programs for children and youth in a variety of private and public programs. Growing up, I was on the “AP track” as others have called it, in Catholic schools, with my older brother and younger sister who had various academic, social and behavioral challenges resulting from their unique psychological makeup. Many of their needs were in the area of adaptive skills, and only became extremely challenging after formal high school education was over. Two of my three closest childhood playmates, one had epilepsy from an AVM, and one had mild CP. My first two years of college, studying engineering, I saw virtually no one with disabilities, but after I changed my field of study, that completely changed. Today, it is mainly at Mass that I’m with my brothers and sisters who experience disability. It’s difficult to put into words a lifetime of experiences both as a sibling, friend, and professional charged with providing therapy, guidance and planning. I’m grateful for the thousands of people I’ve met; we have come so far in bringing others from the peripheries and into the center, we still have so much more to learn and do.

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I went to public school and my children are in public school, these have always been places where I have met people all along the disability/dependence spectrum. I had classmates in high school with cerebral palsy and Down's syndrome.

My children's elementary school houses the space for kids on the autism spectrum who need the most support and as such my kids use language like "Sam, our ASD friend, gave his book report on iguanas today" and visiting the ASD classroom is a reward you can choose if you're recognized for good behavior, both of which are cultural choices made by our principal and staff to make disabled students feel part of the community and not isolated in one wing of the school. We're also building a wheelchair accessible playground this summer and we'll be only the 5th elementary school in the state to have one. This is in marked contrast to our parish K-8 school, which has "invited" the parents of kids with ASD "to learn elsewhere because we can't support their needs." I know that private schools are on shoestring budgets and don't have to take anyone they don't want to but that attitude really strikes me as uncharitable at best, and on my worst days I would say unChristian.

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Public schools have a dedicated source of funds for supporting students with special needs, but that isn't an excuse for parochial schools. You're right that it's a scandal when the schools aren't prepared to welcome the people Jesus was quick to gather to his breast. The FIRE foundation specifically fundraises to close this gap: https://firefoundation.org/

In my own public school experience, I didn't see kids who had IEPs, but I barely saw two-thirds of my grade! We had tracking, like most schools, but we were also very small so once you were on the AP track, it set your whole schedule. I joked about taking AP Gym with all the other nerds... our schedules only left one possible gap for phys ed.

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See I went to a small, poor, rural school that happened to do a huge renovation in the early '90s, right after the ADA had passed, so everything suddenly became much more physically accessible to students who needed accommodation than before. We had an absolutely enormous school district (over 300 square miles!) but I would be willing to bet our physical accessiblilty brought families with special needs into our district over others. And there was no such thing as tracking, no AP classes, so most kids with special needs had at least some class time within the wider school. My high school was not racially diverse but in terms of socioeconomic class and physical ability it's probably the most heterogeneous space I've ever occupied, maybe second only to my undergrad dorm!

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I think most people don’t truly realize how young the ADA is, though! I’m 38, and I was in preschool the year it passed. The next year, my kindergarten installed stair railings for me, and I was able to easily walk from one side of the building to the other. It’s wonderful to see this post and its comments today, the 34th anniversary of the ADA.

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And I’ve grown up under the ADA, so it’s wild that it only became law shortly before I was born

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I'm close to your age Victoria. But as a blind person, while the ADA is important, it's impact wasn't as physically viceral, if that makes any sense; it was more about gradual adoption of technical accomodations. And then I was shocked to discover that a major blindness organization I'm a part of tried to block the ADA for shor-term political reasons.

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Thanks for sharing that! I know from speaking to deaf and/or blind friends that ADA legislation affects their communities differently. It’s hard sometimes to push through well-meaning general calls for increased accommodations, because every disabled experience is different, but changes in consciousness often must start from that more generalized approach.

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I will be interested to see people's answers to this question. I'm a mom of a young lady with Down syndrome, and my suspicion is that we don't really encounter people with disabilities much at all. Something about our culture makes us try to avoid it. I'm really happy to hear that you encounter people at church. We have a small number of people at our church, but honestly, I encounter people with disabilities because it is now my world.

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I also do notice I encounter a lot more kids with more marked disabilities than adults. They go places with their parents and siblings, but there's something wrong (a narrowing of their future) if I'm not meeting many adults who share their traits and experiences.

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Yes, exactly! OTOH, adults' future begins with how kids are accepted. We have to open the way for kids, first. That's better than it was when I was in school.

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I do believe that people are afraid to face our limitations- within ourselves and in others. But I also believe that there are very precious invitations from God to be discovered when we do explore our limitations…

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I know this comment's late, but I didn't see anyone else mention the grocery store, so I'll throw that out there. My local Kroger seems to make a point of hiring people with mild intellectual disabilities as baggers; they're often paired with another employee, but they're the ones who stand at the end of the conveyor belt and do most of the bagging. I don't know if it's a company-wide practice or if it's just this store.

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Well, I work in healthcare, so obviously at work.

I do encounter folks differently in my two different roles. I’m a full time hospitalist so in that role my encounters with folks are relatively brief, crisp, professional, not really a lot of getting to know folks.

But I also offer free (I fundraise my costs so here’s my compulsory plug: go check out Substack where there are links to donate via a 501c3) home visit primary care for people who are out of options, and that’s where I really spend time with folks. I really enjoy the long form (up to an hour or so) visits in that context.

In a purely social context, no healthcare involved, the answer is church for sure. That’s where I encounter the greatest diversity of experience across the board: racially, socio-economically, abled/disabled.

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I really want to edit this comment for using “folks” three times in two paragraphs please don’t judge 😭

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RE: this meta-comment: I love it!! 😂 (I noticed in the first year or two of OtherFeminisms, I'd "up" my writing style game for comments here--re-writing and searching for more appealing synonyms ...in a way I wouldn't normally think to do!)

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Aside from family, my Quaker meeting is definitely the first place that comes to mind! There are several people with mobility issues of various kinds. The building is also quite obviously built to accommodate them.

There is also a disabled woman at my workplace. She’s pretty strong about advocating for herself, which is great in the sense that I learn a lot from her about issues that people might otherwise be inclined to overlook. Admittedly, it is less good that she needs to do so much self-advocacy in the first place.

I also went to my first disability rights protest earlier this year, after our government unexpectedly announced that it was cutting funding that was allocated to help family carers for disabled people to be able to handle the load. They’ve since reversed that decision, which is something. The protest was a nice experience of a space designed for many disabilities at once, with sign language interpreters and plenty of stools for people to sit on if they were tired.

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Church is the #1 place. We have many wheelchair users and people with other mobility aids, a blind man and his family, many deaf and hard of hearing people, and kids and adults with a range of intellectual disabilities or differences. They are fully integrated into the life of our community, from education to serving in our ministries. We also have a number of homeless parishioners. This is a large Episcopal church in the south.

The other place is my son’s school, which is basically a lab school associated with a facility that treats and educates kids with speech, language, and hearing differences. Tons of kids with hearing aids, limited verbal ability, etc.

I used to volunteer with a horseback riding program for disabled kids, and one of the main things I learned there is how limited my understanding of disability was. I’m deeply angered now by how many people, expressly or implicitly, devalue the disabled. I’ve seen firsthand how much people can achieve if they’re simply given the ability to try, and how important they can be to the life of their community.

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My church friend group is pretty homogenous, partly because most churches have a habit of filing everyone into their demographic groups - the moms group, the young adult group, the seniors, etc., so it's really hard to meet someone outside my demographic group at church. I see people with disabilities and I very aware that not all disabilities are visible, so I try to be open about my own limitations to help normalize it.

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I am a 'people watcher' and as I notice people I see diversity everywhere I go - especially in airports (which I like very much). Having said this, I was also fortunate to meet and work with people from all over the world during my time in graduate school. Prominent among these were people from Israel, Argentina, France, Japan, and Australia. However, the place where I met the most diverse groups of people was during my ~13 years as an Army medal officer (physician). Soldiers, their families, and military retirees are a very diverse sampling of people. My duty assignment in South Korea was best along these lines. And with respect to encounters with persons living with disability, my experiences started with my first job in healthcare - I was a nursing assistant (I was called 'orderly' in 1971) in a small inpatient rehabilitation ward. Over the next 50+ years my interactions with the disabled (including now my Grandson) have been many. My most recent professional role was as a Community Health Educator serving 'senoirs' - most of whom would not be described as disabled, but many had difficulties that were in various ways very limiting.

So, as I say, diversity is all around us if we simply pay attention...!

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My volunteer work at St. Augustine Home, which is run by the Little Sisters of the Poor in Indianapolis, Indiana is special place where I meet those who are disabled. The Little Sisters of the Poor have dedicated their lives to providing homes for the elderly poor in many countries across the world. They have much to teach us. The love and care they shower upon the elderly makes all the difference. In my family we are learning more each day about the limitations that come with aging. It can be challenging both for those who are experiencing new limitations and those who are trying to help family members gracefully respond to the changes required.

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Were you and your community part of the Eucharistic Congress?

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Many from my community were at the Eucharistic Congress. Folks from our Small Group and a bus load from the Catholic Church, where I am now a member, in nearby Noblesville. I had a family commitment and could not attend but I have enjoyed listening to various keynotes online- especially Cardinal Tagle!

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