What bothers Mona Ramouni is not being seen


Jose Saramago’s novel “Blindness” imagines a world where suddenly everyone went blind. The world descended into chaos; people misbehaved, and violence dominated. It was not a pretty picture. I think Saramago’s use of blindness was intended to be metaphorical — something like what if we lost our guiding light — but it was also upsetting to think of the disability he chose to make his point.

As a non-disabled person, the idea of suddenly not being able to see is a bit jarring to me. And that’s what Saramago relied on for his apocalyptic novel. But Okemos’ Mona Ramouni said to me that if given the choice, she’d rather be blind than suffer migraines. Unfortunately, she wasn’t given a choice, and she lives with both.

Ramouni, Cherry (left) and Cali outside their Okemos home last week.
Ramouni, Cherry (left) and Cali outside their Okemos home last week.

But the blindness is something manageable and every day to her. You may have seen her around — she went to graduate school at Michigan State. What bothers Ramouni, who is 43, about being blind is not the actual lack of sight. It’s how other people don’t see her as just another human being. Once, she took her daughter to an orthodontist. A staff member was helping Ramouni fill out paperwork and asked her if her daughter had been adopted. Other times, doctors have volunteered to send a social worker to the home, in part to find out who takes care of the kids while her husband, Randy, is at work. (Spoiler alert, it’s Ramouni, the children’s mother.) She has non-disabled friends who won’t let her watch their kids at playdates at her house. They’re not comfortable because she is blind. She wonders, “Are they worried that I might not see their kids turn on the stove?”

“It’s just like with Cali,” she says. Cali is her miniature guide horse. “People would come up and pet her, and Cali would nudge me to get so that I could ask them to stop petting her and people would get furious,” said Ramouni. But it is normal to ask people not to bother a service animal while they are working.

Ramouni has a guide horse for several reasons, which I wrote about nearly 20 years ago. Then she told me she was a horse girl. If you grew up reading a lot, you might remember “Black Beauty,” “Misty of Chincoteague” and “The Black Stallion.” But she also has a guide horse because a mini-horse is a better fit for Ramouni. Horses can live a long time, and the bonds a person forms with a guide animal are like those of a pet, a best friend, and a coworker, all combined into one. But folks ask her all kinds of questions about her guide horses, and she draws attention wherever she goes.

Ramouni leads Cali into the house.
Ramouni leads Cali into the house.

Ramouni is an outgoing, friendly person who is almost always glad to talk about her horses, and she is by no definition shy. But she also wonders: “How do people think they have the right to ask you super personal questions that they wouldn’t ask someone else? I don’t mind answering because I would rather people know the answer than assume, but would you dare ask this of anyone else?” she says.  One can, theoretically, treat migraines with medication. But how do you treat the headache of people failing to see you as a regular person?

“I just want to live my life just like everyone else does. I want to do good work and give back to the world,” says Ramouni. And she has some great ideas about how to do that.

You see, when Ramouni’s first mini-horse, Cali, came to her, she was not even fully trained. Cali had never seen snow, and Ramouni had to teach her what to do if the pair were out walking and Cali encountered a snow bank. That was over a decade ago. Since then, Ramouni has trained several mini-horses. She even trained Cali’s daughter, Willow.

Willow was going to be Ramouni’s second guide horse, but as Ramouni was training her, she met a family with a daughter with several disabilities, including blindness. Ramouni introduced the family to Willow and could immediately tell it was a good fit. Ramouni worked with the child and her mom to walk with Willow. The child now wants to talk (which she didn’t want to before). She is learning about eating from Willow even though, at this time, the child cannot feed herself. Ramouni says, “I knew this kid needed this horse … I felt like Willow was my horse to take care of and train until God let me know where Willow needed to be.”

Ramouni leads Cali into the house.
Ramouni leads Cali into the house.

Ramouni knew that Cali was a great horse, and she had seen that Willow carried her mother’s skills in being friendly and trainable. She decided to breed Cali one more time so that she could train a second horse for herself and let Cali retire. That’s when Ramouni’s family had a huge scare. The breeder Cali was visiting in New York called Ramouni. Cali had hemorrhaged. She probably lost two-thirds of her blood volume, they told Ramouni. Experts said that Cali wouldn’t make it to the specialty vet at Cornell University, which was two hours away. She did make it. Ramouni and Randy dropped their kids off with family and drove straight to New York. They were advised to put Cali down. The veterinarians had never seen a horse survive this. But Ramouni said, “If any horse is going to survive this, it’s going to be Cali.” Ramouni and Randy arrived at the veterinary hospital at 11 p.m.; Ramouni went in and just stood with Cali. Ramouni says, “Cali is not generally an affectionate horse.” She knew Ramouni was there but was not very responsive. Ramouni said, “I just talked to her. I told her, if you need to go, I understand, but I want you to be around.” Cali wanted to be around, too. At one point in the hospital, she came over and lay in Ramouni’s lap. Ramouni says, “It was like Cali was saying I am not ready to go yet.” And Ramouni said back: “I’ll do whatever you need.”

Cali’s breeder had friends in New York near Cornell. They let Ramouni and Randy stay in their guest bedroom. “I was missing my kids, I was sad about Cali, I didn’t know if she was going to survive,” remembers Ramouni. But she and these strangers became close friends, and Ramouni wound up staying for weeks. “Being blind, staying with these people—they were so kind. I was at the point of giving up on humanity. These folks letting me stay, and including me, and being considerate around my disability — asking what I needed and when I had a need saying yes and helping, and when I said no, leaving me alone … .” It was just what Ramouni needed to help Cali fight through her illness: strangers being kind to her and treating her like family — even though they knew nothing about blindness and not a lot about horses. They quickly became experts at both and fell in love with mini-horses. Ramouni jokes with them that they are now going to have to raise a horse for her to train.

She was kidding a little — but mostly not. Ramouni is excellent at training mini-horses and wants to do more of it. She and her husband took Cali and Willow to a competition once when Willow was young. They train their horses so well that they won every category except driving. “But hey!” quipped Ramouni. “I was a blind lady driving a horse. I didn’t crash—but I didn’t win either.” 

Ramouni leads Cali into the house.
Ramouni leads Cali into the house.

Ramouni often has a funny quip or a comeback to some of the aggressions she faces when she tries to exist in the world. Dessa Cosma, founder of Detroit Disability Power, says, “While it is necessary to have defense mechanisms when you are bombarded by aggression …. ableism is no joke. We all have our coping mechanisms, and humor is pretty good as coping mechanisms go.” She adds that humor is not only a coping mechanism. It’s also a part of disability culture. “Disability culture is a real thing,” says Cosma. “We have humor and language and inside jokes as disabled people. It’s not just a coping mechanism. It’s also hilarious and fun and helps you bond with other disabled people. It also helps non-disabled people see that your lives are not bad or to be pitied.” I’ve known Cosma for a long time. She was born without femurs and knees, and once she told me she was glad she didn’t have knee pits (like the inside of your elbow, but behind your knees). I still laugh every time I think about my own knee pits, which are, yep, pretty icky. But I never would have seen that perspective without being friends with her.

There is a French detective show on PBS (with subtitles) called “Astrid et Raphaëlle.” One of the protagonists, Astrid Nielsen, lives with autism and partners up with a police captain (Raphaëlle) to solve crimes. Astrid’s careful attention to detail and love of puzzles help her see crime scenes in ways different from others, and she becomes an asset to the team. However, the team has to learn how to work with someone who exists in the world differently. Most episodes of “Astrid et Raphaëlle.” also show the “social skills workshop” that Astrid and other people with autism attend together. In it, though, they are less learning social skills and more holding a support group for sharing how to deal with the group they call “neurotypicals.” I told Cosma about this, and she said, “See, I love the framing — focusing on the culture of the people in a positive way… There is a lot of cultural work to be done to understand that disability is not a bad thing; it is a part of human diversity.”

Cosma saw this need so frequently that she saved up money, quit her job, and gave herself a year to start a sustainable nonprofit to tackle disability issues. It took her 13 months to get Detroit Disability Power up and running, and now she has nine employees and a website that shows just some of the great work her organization has already done.

Like Cosma, Ramouni sees an unmet need for a segment of the disabled population: folks who have low or no vision and need a guide animal but prefer a mini horse to a dog. Ramouni wants to start The Cali Corp.—she wants to be able to train mini-guide horses for other people with visual disabilities. Her business partner, Teagan Russ’s family, has bought property in Pennsylvania, and Ramouni already has a stud colt named Sonic. Ramouni and Teagan have also just launched their first fundraiser. They commissioned an artist to do a sculpture of Cali walking with her ears pointed in two directions, signaling she was listening to Ramouni. The pair want to sell models of this statue like Breyer Horses (marketed as “realistic equestrian models and accessories”) to raise money for the company.

Ramouni and business partner Teagan Russ plan to start a company called the Cali Corp. to train mini guide horses. To raise funds for it, they will sell a sculpture of Cali in two different sizes that have been created by Leah Peretz of Canyon Spring Studio in the Netherlands.
Ramouni and business partner Teagan Russ plan to start a company called the Cali Corp. to train mini guide horses. To raise funds for it, they will …

Ramouni and Teagan also started a company called Positive Impact Equine. That company plans to make and sell products for people with horses — products that aren’t out there yet, like slow feeders for horses and treats that can also function as enrichment — brain work for them. The pair plan to roll the profits from Positive Impact Equine into the Cali Corp and fund the training of guide horses.

Ramouni is now trying to train another mini guide horse for herself because Cali has never fully recovered from her health scare in New York. Ramouni has already purchased the mini horse and knows what she needs to do to train it, but she needs a sighted partner (or several) to help her. Though she posted her needs on Facebook to the Okemos community page and generated some interest, no one has yet to help.  Ramouni wonders—are folks intimidated? She cracks, “Do they think I’m going to ask for their firstborn?” More seriously, she wonders: are mini horses intimidating?

Or is it the person with the horse? Ramouni reports that when she is out walking and using her cane and comes close to other people, they suddenly go silent. She laughs (Ramouni is always laughing), “Can you keep talking so that I know where you are?” she asks. Cosma notes, “When people don’t know how to act, they just avoid (action and communicating),  and that really hurts everyone, the person with the disability and the other person.”

Cosma says that they talk about the language version of this a lot at Detroit Disability Power’s ableism workshops. “People have fear around language and don’t know what to use. They think disabled is an insult. It’s not; it’s reality. They try all these other words. People do all this work to avoid the word disabled because they are so nervous about offending someone. When people get nervous about language, they don’t talk at all, and then people with disabilities suffer.”

Dessa Cosma, founder of Detroit Disability Power: “We have humor and language and inside jokes as disabled people. It’s not just a coping mechanism. It’s also hilarious and fun and helps you bond with other disabled people.”
Dessa Cosma, founder of Detroit Disability Power: “We have humor and language and inside jokes as disabled people. It’s not just a coping …

“Just like white people need to do their own work (in studying and combatting racism), nondisabled people need to do their own work,” says Cosma. “Read stuff written by disabled people so that you can be a good ally.” In fact, her organization has a resource devoted to just this kind of information-seeking: Disability, Ableism, & Audism Resources | Disability Power (detroitdisabilitypower.org). 

Sometimes, Ramouni asks people around her to do some of their own work, too. She tells me that a neighbor came over and said, “I heard you have a horse, and these are not allowed. I am a zoning officer.” Ramouni told him to read about mini horses as service animals. Ramouni is steadfast in her willingness to talk to people about her guide horses but also in her insistence that they are well within her rights as a person with a disability. But not everyone knows that, and she often has to remind them and point them in the direction of laws like the Americans with Disabilities Act.

I asked Cosma, of Detroit Disability Power, if there was one thing she could convince the state Legislature to do to improve the lives of those living with disabilities. Having just read Detroit Disability Power’s Poll Audit Report, I somewhat jokingly said, “A law that requires all polling locations to be accessible?” Cosma said, “No, that’s already there; it’s just not enforced.” Polling location accessibility isn’t the only law around disability that exists but is not actively incorporated into decision-making or uniformly enforced. Plus, says Cosma, “The ADA is considered the ceiling when it is really the floor.” In other words, the law is a good start, but it is not nearly enough. Cosma tells me she would start an office of disability affairs at the state level with some authority and resources behind it. She would like to see such an office begin to change how decisions are made and the culture of the entities affecting people daily. She continues, “There are multiple challenges for disabled Michiganders, of which there are 2.4 million (about 25% of the population). Disability affects most people … every issue has a disability angle … every decision should have a disability analysis before the decision is made.”  But right now, she says, “No one thinks about us until the end, if at all.” A state office, in other words, that would ensure that all the various departments making decisions are accounting for a large and diverse disability population in our state.

Such an office or organization might improve infrastructure for all of us — because, after all, good design benefits everyone, not just those who have previously been left out. But that would only be one step in a larger picture, a picture where we all start thinking about a world made better by difference.

As a child of immigrant parents and as a student of psychology, Ramouni talks about the constant worry, as a parent, that you are going to screw up your kids’ lives based on the world we live in or the experiences they have socially in the world. Or sometimes maybe the fact that you don’t drive. “But,” she says, “hardly ever is my worry that I am a blind parent.” And it bothers her that her vision loss is the first thing others see about her when they see her as a parent, and they see it as a minus, not a positive difference.  “I hate feeling like I have to justify to people being a parent.”

“If another parent sends a kid out with a stain on their shirt, they assume the kid is just a mess. If I send a kid out with a stain, I am judged,” Ramouni says. She reports having to throw out clothes with any stains or rips immediately. Because she knows she will be judged worse than anyone else for how her kids are dressed.

Someone even wrote a book about Cali and Ramouni. In Spanish. And in Braille. It’s supposed to have pictures you can feel. But, Ramouni notes: “You can’t even read the braille — it’s so badly done — too small. Not raised enough.” And to add insult to injury, in the hardly readable story, Cali is the girl, and Ramouni is the horse. “They could have at least consulted with me and done it well,” she laughs.


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