Jonathan Cauchi is the Community Education Specialist for Disability Advocates and the host of its Flattening the Curb podcast. Located in Grand Rapids, Michigan, the organization, founded in 1981, works alongside persons with disabilities as they seek to lead self-directed lives and advocates for accessible and welcoming communities. Cauchi recently sat down with Randy Flood, psychotherapist and Director of the Men’s Resource Center of West Michigan for a segment of the Revealing Men podcast to share his story and to talk about the ways in which men face the challenges of living with a disability.
Cauchi, now in his 30s, was diagnosed with Leber’s hereditary optic neuropathy while he was still in junior high school. The disease caused him to lose most of his eyesight. In his position with Disability Advocates, Cauchi highlights stories about the work organizations do to support individuals with disabilities and creates a platform for individuals with disabilities to tell their personal stories because as he says, “there are so many misconceptions about people with disabilities.” Cauchi doesn’t hesitate to talk about his journey. The conversation is peppered with blunt observations and laughter. Listen to the full podcast on Google Podcast, Apple Podcast, Spotify, or Stitcher to hear Cauchi’s first-person experiences including what happened to convince him to use the white cane.
When Life Changed
As Cauchi tells it, he lived a pretty normal pre-teen life. He loved cars and baseball. And he was looking forward to entering middle school. He wore glasses since the age of 10 for near-sightedness but his eyesight seemed to be getting worse.
“The day was August 24, 2002. It was two days before middle school started, four days before my 12th birthday. Going around, I’m messing up everything. My dad was furious about how I cut the grass. There was not a single straight line and, as he would say, more mohawks than I had in my head. (I was a punk rocker back in the day.) … I remember playing charades with my family and I’m trying to read the card. All I could read were the last couple letters: E L L A. And my family will not let me forget how I acted out CINDERELLA, pretending I was an umbrella!
We came to the conclusion that maybe I needed a stronger prescription. We went to Sears Optometry the next day and they dilated my eyes and went ‘there’s something seriously wrong…you need to get him to the hospital.’ For the next six months, Cauchi’s experience mirrored that of many people who are desperately seeking the right diagnosis.
Fighting for a Diagnosis
After being seen by a neuro-ophthalmologist, Cauchi and his family are told that “there’s something a little off but it’s within a normal range” and they’re sent home. “We kept going back for further tests,” Cauchi says, “and one of the most impactful moments was when he asked me to leave the room so that he could speak to my mom in private.” It was at that point, Cauchi put his ear to the door and heard the doctor diagnose his worsening vision as “hysterical blindness.”
“So hysterical blindness would be that there’s some kind of psychological underpinning to it?” asks Flood. “What does that mean?” “That was the thought.” says Cauchi, “He couldn’t identify anything physically wrong with me – that a Sears optometrist could instantly – and basically was telling my mother that I was lying and making it up. Give the kid therapy. Give him this placebo. Presto-change-o! He can see again. He probably just doesn’t want to go to school.”
This was, as Cauchi relays, the furthest from the truth. And it had a lasting effect on him. “I felt like my doctors didn’t believe me. My parents didn’t know what to believe. I really felt like an outsider and a freak and [there was] nobody I could trust.” Flood notes, that the diagnosis gave Cauchi the opposite of what he really needed in that moment.
Six months later, Cauchi and his family got a second opinion and the correct diagnosis. “The doctor there looked at me and went ‘there is something wrong. It’s either A or B. A blood test will determine it.’ Got the blood test and — after six months of struggling through school, not knowing what’s going on — got a diagnosis. I am legally blind due to my optic nerve deteriorating.”
A Non-visible Disability
Flood asks Cauchi how he was able to reconcile the life he was living and the dreams he had with the reality of his diagnosis. Cauchi first responds by recounting what he lost – dreams of driving, playing baseball, communicating with his peers via AOL. Just being a middle-schooler.
“A lot of things in my life were just gone. And everything everybody else was into at the time there were just so many barriers to me getting into. …There were a lot of barriers for me to adjust to. ANYTHING my peers were doing. And I honestly didn’t have the answers because it was a whole new thing for me.”
“Were you able to be honest with the emotional impact that it was having, the relational impact,” Flood asks. “Did you have a place to go with that or was it more internalized at that time?” “After the hysterical blindness false diagnosis, I’d been in therapy,” Cauchi says, “And the big thing was I didn’t trust anybody. I didn’t trust that anybody had my best interest at heart because I really felt that for the traumatic six months, nobody had my back. It was difficult. None of my peers really understood.”
Part of the issue, Cauchi explains, is that he doesn’t have a “visible” disability. “At first look, I don’t look like I have any sort of impairment. There are a lot of people who kind of jump on that bandwagon of downplaying what my disability is or not believing it because you can’t see anything wrong.”
Wrestling with Bias
Cauchi was determined to remain active in sports. “My school actually refused to let me participate in gym class,” he says. “They were too afraid that I would get hurt. …Phys. Ed. was linked to health class so I got exempt from that too.” He decided to join the middle school wrestling team and continued wrestling through high school.
Even though he found his niche, Cauchi’s abilities weren’t celebrated by everyone. “I had some great assistant coaches – I did not have a great head coach. My peers did not necessarily like me. One of the reasons was they didn’t want to get beat by the blind kid. They didn’t want to look bad going up against me.…there was so much ridicule that I would get. My physical strength was [attributed] to the “r” word …My coach would refer to me as ‘retard strength’ because I had an exceptionally strong grip. I had locks that people could not get out of. And that’s what he [attributed] it to. It was not that I was just a strong kid, …”
“So he attributed it to something like THAT?!” asks Flood. “I really felt like I was that low bar that he would set,” responds Cauchi. “The truth was, I was good. I had a lot of talent. I was varsity. I excelled in a lot of tournaments. Had a varsity jacket decked out in medals. But on my team, I truly felt like I was an outcast.” Despite his efforts to break through barriers, Cauchi ends up, as Flood says, “being seen through this lens of your disability with others creating an identity for you that you’re trying to escape and shed.”
In his work with clients at the Men’s Resource Center, Flood often meets men who don’t want to ask for help because they fear appearing vulnerable and less manly. Cauchi’s experience isn’t all that different. “I hated the fact that I was blind. I refused to use my cane for many years. My cane felt really like I’m advertising my vulnerability. If I didn’t have my cane, I could fake it. I could get by … I could pretend to be like everybody else.”
He continues, “I was always taught that guys don’t show weakness. I really felt with my cane, it’s out there. Everybody knows my weakness. And oftentimes, if they don’t actually know it, they’re assuming much greater … So often I feel my vision is the only identity people see.”
“That’s tragic,” Flood replies. “… I mean you think of traditional masculinity as kind of like priding yourself on rugged individualism, independence, not asking for help. … Not only are you wrestling with a disability but you’re wrestling with your manhood in some ways I would imagine,” he suggests. Cauchi admits the idea of asking for help is often a trigger for him and thanks Flood for bringing it “…growing up, I was always told ‘you need to be more independent. You need to do this on your own.’ And that’s what I was taught at a very young age. …As soon as my disability became known it was always ‘you need to ask for help.’ I didn’t know which direction to go. …And I really felt that asking for help was, again, a weakness and it was me throwing that masculinity away.”
Asking for Help is Self-Care
One of the tenets Cauchi shares is “if you don’t ask for help, the only person you’re really hurting is yourself.” “There’s no weakness in asking for help. …I always encourage people like truly know what your barriers are. And push those barriers when you can because you need to have that opportunity to grow. But when you push on that barrier and it pushes back, that’s when it’s a good idea to get a second pair of hands.”
“I would imagine that just like anything, there’s a balance there,” says Flood. “If you get too needy with some kind of disability, you’re not trying to be autonomous in a way that really can help you. That can be a problem. And then there can be a problem on the other end of the continuum of trying to be too independent. And trying to find where’s that sweet spot for you.”
Cauchi agrees. “Where’s that sweet spot? Am I asking for too much? Or am I struggling too much?” “There’s probably tension in that that you probably have to get used to carrying?” asks Flood. “In just about every relationship,” Cauchi answers.
Pushing Against Ableist Barriers
Cauchi explains how society has often portrayed and represented disability as a negative thing. “It’s one of the worst things that could happen to somebody.” These misperceptions can leave people living with disability in a bad place. “When you’re interacting with the community and you’re feeling ableist views of negativity towards your disability: people’s assumptions, people’s views that are putting you down. There are individuals with disabilities who will start to believe that. They internalize those ableist views. … there are people who crumble underneath that.”
“So often just one disability can instantly compound. It’s a joke I often make: “It’s a buy one, get a dozen free deal” because you add in depression, you add in anxiety, sometimes paranoia (Are people looking at me right now? What are others thinking?). It all builds up on you. There’s a lot of mental health that builds onto any physical disability or any other disability because you’re so worried about how everybody else is reacting because you feel like an outlier.”
Flood wonders, “I’m always curious about gendered uniqueness and I’m wondering if males [living with disability] have a specialized stigma that they wrestle with, with society?”
Cauchi has a young daughter. “When I’m walking her with her stroller and I have my cane out, it is very interesting how many people come up to me and are like ‘are you o.k.?’ Because they really see that as me being incapable of caring for my daughter. …My ability is to do things. People don’t often think of me when they’re like ‘oh, I need help building a fence. Or ‘I need to do this,’ because they see that disability as less capable of doing those things. I have built a fence before. It was not straight. It still stands.”
How Aging and Disability Are Similar
Flood has done previous podcasts on men and the aging process. He asks for Cauchi’s thoughts on aging and disability. “I’m going to try to say this in a way – you can correct me if I’m not being sensitive to it but — I think that for some of us who aren’t born with a disability or develop a disability, the aging process is a slow disability.”
He wonders whether people living with disabilities age better (or accept the aging process better) because they’re forced to accept that their body’s not always going to work. “I just had a knee replacement and I competed in baseball in college,” Flood says, “and so I wrestle with my slow aging process and how my body just doesn’t serve me like it used to.”
Cauchi refers Flood to the Americans with Disabilities Act: “Their definition of a disability. It’s a physical or mental impairment that substantially limits one or more major life activities. And, as you are aging, I hate to break it to you, but if your knee’s not working properly, it’s probably a physical impairment that’s substantially limiting one or more major life activities. It’s a disability.”
Where Cauchi thinks individuals living with disabilities have a head start with the aging process, is that they’ve already gone through that stage of grief. “I’ve accepted it and I know how to use the resources, how to ask for the accommodations, not be ashamed of it. …A lot of people, when those [signs of aging] do start to come through and you’re in those early stages of grief related to a disability … it is a stigma.”
Finding Strength in the Struggle
Relating to his fight to participate and, ultimately succeed, in sports, Cauchi stresses the importance of giving individuals living with disability – “especially young males” – the opportunity to participate in athletics; be physical. “There is so much more that’s learned through sports than just throwing and kicking a ball. It’s that competitiveness, it’s that outlet, it’s leadership skills, that strength of character, that accountability. There’s so much to learn in that. And I think that for a lot of individuals with disabilities, especially the physical ones, where they get ‘exempt,’ or removed, or pulled out, they don’t get exposed to that and that is a true hindrance to them being able to build their self-identity.”
This reminds Flood of the clients he works with and the encouragement he offers. “I think that sometimes what we think is going to be a major setback, a major blemish, a major issue, we don’t embrace it as an opportunity. And I think guys come to the Men’s Resource Center sometimes with an addiction and they consider that a disability — like ‘how am I ever going to be normal?’ Sometimes I tell them that the work that you do wrestling with your disability actually can make you a stronger person, a more defined person, a more well-rounded person. Trying to reframe that struggle into something that can help them be a good person, a well-developed person. Do you see that?”
“Oh, for sure,” responds Cauchi. And then adds, “Having a disability, I’m playing the same game as everybody else, I’m just playing on hard mode. And when you’re playing on hard mode versus normal mode, you’re usually quite a bit better at that game.” “I’m doing things just like everybody else,” he says. “I’m out there living my life. Working. Traveling around the city. I’m doing all these things but with additional obstacles that I have to overcome. My problem-solving skills, my creativity, my perspective is vastly different.”
Cauchi as a 30-something has journeyed far from the misdiagnosed 12-year-old. “Looking back, I know I hated having a disability. I hated being a freak, a loser. I hated all the bullying. The ridicule. …But I would not be where I’m at today. I would not have a lot of the friends that I have. I probably wouldn’t have met my wife or had my daughter because I probably would have been somewhere else doing something completely different. So, I do look at it now as – it was like a destined path I had to take. But it took a long time to get me there.”
Accepting Personal Responsibility to Change
Flood recognizes the importance of the struggle – whatever that struggle might be — in shaping the individual. “Some guys that do their work with whatever brings them into the Center, I say that ‘you will, if you stay, probably, and if you work hard and accept this struggle, this human struggle—whether it’s an addiction or some kind of violence problem, or whatever— you can be more healthy than the mere normal, because of that requirement to struggle, and to learn things that you maybe wouldn’t have learned, and to go to these deep places that maybe you wouldn’t have gone to.”
What kind of encouragement would you offer, Flood asks Cauchi, to someone struggling with a situation that would require counseling but they’re saying “I don’t want to ask for help because that’s a sign of weakness.” “I would simply say if you’ve ever heard that phrase ‘the only stupid question is not asking a question,’ the only stupid thing you can do with yourself is not ask for help when you need it. Because the only person who’s really hurting in that scenario is yourself.
“By not asking for help,” Cauchi continues, “you are impacting yourself more than anybody else. And trust me as somebody who is literally waving the white stick in front of him showing everybody my vulnerability. People suck. I deal with so many stupid comments. But at the end of the day, those people are just faceless drones that I am not going to interact with or see too much more. They are just passing words. Gotta let them just roll off your shoulder. You have to take that step because we, as humans, only have control over two things: our actions and our reactions.”
Flood responds that he uses that same language in his men’s support groups. Cauchi laughs, “Like I said, I’ve been through a lot of therapy!” “You can tell,” Flood says. “And I see – I have a lot of admiration for the strength you exude and the wisdom for such a young man. It’s pretty enviable.”
Rejecting the Idea of Vulnerability
It’s at this point Cauchi offers up the story of why he decided to start using the white cane [available on the podcast]. “I always hated using my cane because I didn’t want people to see that vulnerability. I didn’t want to be singled out. I didn’t want people to know. I started to realize that I wasn’t as smooth as I thought I was.”
Once he decided to use the cane – what he had once seen as a sign of vulnerability – “I got away with so much more stuff! And I really realized that yea, the perspective changed, but I had some control over that perspective. I didn’t have to take that time to explain myself in every situation. … Don’t get me wrong. I didn’t necessarily like that added attention but it was better than the alternative. And, I think, a lot of times, that’s the situation of that acceptance is better than the alternative. ‘cause that alternative is getting me nowhere.”
Flood observes, “We talk about masculinity as prizing courage and strength and stuff. I think your vulnerability and sharing who you are and your struggle is your strength and there’s a lot of courage in that. And I appreciate you doing that today with me.”
Stop Sweeping These Topics Under the Rug
As they were ending the conversation, Cauchi comments that he too appreciates the opportunity to talk about subjects such as disability and mental health. Topics that don’t get talked about enough. “I’ll even add to it: masculinity is often a subject that gets swept under the rug; not being viewed as an important subject to discuss. [But] unless we discuss these topics, we make them known, we are going to stay in a stagnant place. I’m all for educating.”
If you or someone you know is struggling with mental health issues, issues of addiction, anger issues, basic human struggles, it’s not a sign of weakness to seek help. As Cauchi says, “By not asking for help, you are impacting yourself more than anybody else.” The Men’s Resource Center offers in-person and online counseling/coaching programs in addition to men’s support groups and individual therapy. You can contact the Men’s Resource Center online or call (616) 456-1178 for more information about its programs. Also, feel free to reach out if you have questions about this segment, ideas for a topic, or would like to be a guest on the Revealing Men podcast.
For more information about Disability Advocates and Jonathan Cauchi’s work, visit www.dakc.us.
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