Holly and her guide dog in a park, with Holly kneeling next to her guide dog, both of them looking at each other

Yes, I Am Blind. Yes, I Have Back Fat.

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The first Wednesday of every month, this momma gets a night out on the town. My guide dog Frances and I walk 15 blocks to a local catering hall where we attend a Soroptimist meeting. Sometimes having a guide dog is a lot like having a toddler, meaning you better make sure you relieve your dog before you get ready to sit through a three-hour dinner. It’s not unusual to catch Franny and I frequenting her favorite grassy spot before we enter the building. That’s exactly what we were doing when we were approached by a woman coming out of the local bank.

“What a beautiful dog!”

“Thank you,” I said.

“Why does she have the leather thing on?”

“She’s a guide dog.”

“A guide dog? Like for a blind person? Are you blind?”

“Yes, I am blind. This is Frances, my guide dog.”

“Oh wow! I’ve never met a blind person before or an actual guide dog.”

I could tell her enthusiasm would most likely make me late for my meeting.

“Where are you both heading tonight? Do you need any help?”

“No thanks, just going across the street. Franny can get me there.”

“Oh, you have an event tonight?

“A meeting, actually.”

“So that explains the fancy attire. I love that shirt.”

Frances continued making her tiny circles, preparing to squat, when the woman walked closer. “But did you know your back fat is showing? I just wanted to tell you in case you were unaware.”

I felt like I was having an outer body experience. My mind was spinning and I swear on my life even Frances was glaring at this lady in disbelief, as if to say, “Oh no you didn’t.”

Unaware? Was this woman fricken’ for real?

I was stunned by her ignorance — absolutely floored.

The Reality:

Yes, I am blind. Yes, I have back fat.

I also have front fat.

Side fat.

Stretch marks.

And cellulite.

I have dimples is places there “should be no” dimpling.

I have a double chin — quite possibly a triple. But who’s counting?

I have crow’s feet.

Laugh lines.

Wrinkles.

And middle age acne.

I’ve also been known to have the occasional chin hair. (Just because I can’t see them, doesn’t mean I can’t feel those little suckers.)

I have saddle bags.

Saggy boobs.

And a good extra 20 pounds around my mid section.

Trust me; I am aware.

But here’s what this person doesn’t know about the body she was so quick to criticize.

This body has survived cancer.

It has been poked.

Prodded.

Sliced.

And manhandled.

This body has been through biopsies.

Mammograms.

Surgeries.

Chemo.

And has had enough radiation to quite possibly glow in the dark.

This body has carried two children… to term. Survived 10 months of pregnancy. And was cut open during two C-sections.

This body did what doctors thought was impossible; it has survived.

These eyes she thinks can’t see “back fat” once had 20/20 vision.

Cancer and radiation robbed me.

My eyesight was stolen from me.

And that same, monstrous disease also stole my hair, leaving me to live with post-chemotherapy alopecia.

I can only assume she was unaware that I was also wearing a wig that evening.

Every single day of my life, this body lives in pain.

Scars burn.

Joints ache.

My vision continues to decline.

I am in chronic, constant discomfort.

But this body needs to keep going because I have two daughters to raise.

I have a husband who needs me.

I have a community that I’m a part of.

So I force my legs into motion.

I muster the the strength to grip my guide dog’s harness.

And there are many times I’ve needed to say a silent prayer just so I can make it through the day.

As for my “back fat,” neither my children or my husband seem to notice when they wrap their arms around me.

I am aware that I am squishy in many places. However, I like to think my extra “squish” makes for softer snuggles.

After everything I’ve been through, my family doesn’t care what I look like, they just thank God that I am alive.

My Response to “Back Fat”:

I looked at this woman, right in the face.

“Can I ask you something? Would you have told a sighted woman who you just met on the street she had back fat?”

“Well, no. I just assumed you didn’t know because you’re blind. I wasn’t trying to insult you.”

“Well ma’am, you did exactly that. Yes, I am blind. Yes, I have back fat. Trust me, I am aware. But I would much rather live with my back fat than be ignorant; because the way you just treated me was the height of ignorance. Just in case you were unaware.”

With that, I grabbed Frances’ harness and we walked across the street to our destination. I held my head high and marched my “back fat” right into that meeting. I felt proud of me. I felt proud of my imperfect body, but mostly I had felt proud of my response to the woman I had encountered that evening. Beauty fades, ignorance is forever, and you don’t need perfect vision to see that.

Holly and her guide dog in a park, with Holly kneeling next to her guide dog, both of them looking at each other

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What It's Like for Me to Vote With Low Vision

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I did it. I voted yesterday and I’m so glad I did. I was doing my chores this morning while thinking about what to write about regarding my low vision. It takes some thought because I have lived with it all my life. How I approach situations and cope is not anything new for me. I realized suddenly that yesterday I was faced with a challenge that is worthy of writing about. I voted.

Many people vote. It’s not about who I voted for or what policies I support. It’s how I voted. A sighted person would walk in, stand in line, be directed to a booth, vote, and leave. It isn’t so simple for me. My husband and I walked into the voting precinct yesterday and there were logistics I needed to think through. The line was fairly long and the room beyond the line was a blur to me. I knew there was a table to the left of the front of the line. I did not know until I was up in front whether there were one or two people manning the table.

The first thing I did was ask my husband to get behind me so he could tell me when it was my turn to approach the table. As we waited in line, I heard a man at the table asking each person whether they were voting Democrat or Republican. This made me uncomfortable because voting is a personal and private thing for me. I don’t want to share my views
with strangers.

When my husband told me it was my turn, I walked over to the table and saw there were two people manning it. The man asked me, “Democrat or Republican?” I answered and he told me booth #2. Um, OK. Booth two. He must have realized I could not see well and told me the man behind me could help me. He led the way.

I opened the curtain and noticed there was an electronic type of contraption for casting my vote. Can you say panic? I knew I was not going to be able to pull this off alone. I had my magnifying glasses, but the setup meant my boobs would be hitting buttons whether I
liked it or not if I tried to read the screen that way. That wasn’t going to work. I asked the helper if I could get my husband to help me out. He said sure, but my husband was already in a booth somewhere in the room.
I reluctantly turned to the stranger and asked him to help me. He agreed. I believe he was just as uncomfortable as I was, so he went down the list of candidates and policies for me and entered whichever I chose. I hope. He was very nice. Once voting was done, he asked me if I could find the door. But of course! Thank you and goodbye.
Large tree with American flag flying in the background.
Large tree with American flag flying in the background.

I walked out and found my husband just outside the door. We walked away talking about the ballot and politics. You know, the important stuff. I am not writing about this particular point of my day for sympathy. It’s just an observance of something I normally don’t consider to be different or out of the ordinary, but when I sit and think about it, it would be for most.

Lucky for me, I had a camera to capture the big strange tree pictured. I could come home and look at it up close on the computer and see the American flag that I did not see when I took it. Life is good.

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Thinkstock photo by Iceman J.

 

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I Don't Suffer From Blindness. I Suffer From Ableism.

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I have retinitis pigmentosa. I don’t suffer from retinitis pigmentosa.

Let me explain. Living with retinitis pigmentosa isn’t always easy. I have embraced it and have had a lot of great experiences directly related to my diagnosis of RP and legal blindness. But I still have bad days, such as recently when I was walking and hit an open filing cabinet and had a resulting concussion. But I still don’t suffer from RP.

I feel like I suffer more because of ableism. According to the Oxford English Dictionary, ableism is: “the systemic oppression of a group of people because of what they can or can not do with their bodies or minds as the result of ignorance.” In simple terms, it’s when people’s practices around and attitudes toward people with disabilities devalue and limit people with disabilities, or they discriminate in favor of “able-bodied” people. It’s not the actual condition or disability itself that is the limiting factor, it’s society’s perception and treatment of people with disabilities.

I have faced a lot of ableism over the years, but a few specific examples come to mind:

  • Even though a PowerPoint presentation is completed in order to present to the audience, the presenter won’t give me a copy of it until after the presentation. Therefore, while people who are sighted can have access to the presentation materials during the presentation, I don’t have access to them until after. Ableism. 
  • I’ve also heard the term, and not in relation to me, “the blind leading the blind,” a lot.. Now sometimes, people do joke about it when one of my best friends (who is blind) and I are leading each other… it truly is “Blind leading the blind.” But more often than that, it’s in relation to somebody who is directionally challenged leading around somebody else who is directionally challenged and they just end up going in circles. I am pretty good about getting to where I need to go and am pretty good with directions nowadays, and I am also blind. So this phrase can be offensive. Ableism.
  • I can’t tell you how many times people ask my boyfriend if I want something or if I need something, when I’m right there. They assume because I’m blind I can’t express my own needs or desires and they have to ask him. If you know my boyfriend, you know he is super quiet, so he usually just goes “uhhh…” and then looks at me to respond for myself. Ableism. 
  • People have either grabbed my cane or my guide dog harness handle to “help” us across the street or get to a destination. They assume we need help, just because I have a disability, even though they never asked. This usually does a lot more harm than good and is incredibly frustrating. Ableism. 
  • I’ve been introduced as someone’s “blind friend” before. Now if my best friend I mentioned earlier who is also blind wants to explain how we met because we both have the same eye condition and disability, that is usually OK. But if someone without a disability introduces me and one of the first things they use to introduce me is my disability? That’s not OK. Ableism.

Those are just a few examples of how I’ve experienced ableism. Unfortunately, people with all kinds of disabilities experience ableism on a regular basis. People without disabilities often think that by providing one type of accommodation, it is the right fit for all people with disabilities. That is not true and is ableist. People use ableist language all the time and it is damaging to people with disabilities. For example, how often have you heard, “What, are you deaf?” or “You’re blind as a bat!” These can be insulting to people who really are blind or deaf. “Crazy” is a term a lot of people use when somebody’s doing incomprehensible things, but in the past it has been used to describe people with mental illness.

Why is ableism not OK? Besides the fact that it is point-blank discriminatory toward people with disabilities, it suggests that people with disabilities are lesser than people without disabilities. I often compare it to sexism because that’s more widely understood. Sexism is when people automatically think men are better than women. This is not the case; neither are people without disabilities are naturally greater than people with disabilities.

I don’t like term “suffers from” in relation to any medical condition in general, because it’s not person-first. However, I do recognize that there are people who truly do suffer from their medical condition and choose to use this language when describing themselves. I, however, feel that in general I do not suffer from my eye condition. I suffer from society’s view of people who are blind. I suffer from ableism. If people would stop assuming that I am lesser and start recognizing me for my abilities, I would not have the struggles I do today and RP would not be a big thing in my life. It would just be part of it. But because I have to tackle ableist views so often, RP is a bigger player than it needs to be.

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Thinkstock photo by Otto Kalman.

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The Essential Lessons Blind Children Can't Get in the Classroom

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I was asked by CAPVI (California Association for Parents of Children with Visual Impairments) to help deal with an Orientation and Mobility issue. There is a school district that is not letting the Orientation and Mobility instructors take their elementary students more than two blocks from the school. They are also preventing the instructors for middle and high school students from working with their students outside of school hours.

After writing the letter, I realized I wanted to send it to a bigger audience than just the school district involved. I wanted to acknowledge how much of Jacob’s success as an adult is a result of the Orientation and Mobility instruction he received during his school career, and how grateful I am to the programs and individuals that provided it. His O and M folks and his teachers were all part of the village that got Jacob to where he is now. I am indebted to all of them.

To Whom it May Concern:

I am Judith Lesner, the mother of Jacob Lesner-Buxton. Jacob has cortical visual impairment, nystagmus, amblyopia, mixed athetoid/spastic diplegic cerebral palsy which affects his speech as well as fine and gross motor movement. He also has Asperger’s syndrome. He is now 33 and has a B.A. in Social Work from California State University, Monterey as well as a MSW from California State University, East Bay. After being raised in Oakland, he now lives in Santa Barbara where he has a full time job as a Community Organizer with the Tri-County Independent Living Resource Center. He has been working there for over three years.

At the present time he shares an apartment with another man. He has been living on his own for most of the time since he graduated from high school. His main limitation now is that he cannot drive. Although he is a Regional Center Client, the only assistance he is presently receiving is someone to take him shopping in a car once a week. Part of his job involves traveling to the organization’s satellite offices as well as conferences and meetings. Most of this is done by city buses, regional buses and vans, Amtrak and Greyhound.

I attribute most of his independence to the Orientation and Mobility Training he received from the Oakland United School District’s Visually Impaired Program and from his one year of O and M at the California School for the Blind. It started in pre-school with walks to the grocery store, and then he progressed to more and more field trips to get him out into the community. At the California School for the Blind, he was taught to shop independently at a small mall after being dropped off by the school’s shuttle. This was done after the regular school day was completed.

From the time he entered middle school, all of his O and M lessons were after school. This allowed him to have longer lessons and not miss any of the regular academic day. They included lessons on city buses, the BART system and trips to the Oakland Airport. Lessons also included trips to San Francisco and to department stores to learn about clothes shopping. There was no way he could have had these experiences during the school day and still fulfilled his rigorous academic schedule.

Besides the Orientation and Mobility skills, he learned social skills needed to be part of the community, as well as time and money skills. Most importantly, he gained confidence in his ability to engage in various activities in the community. I do not believe that these skills can be learned in the vacuum of the school building, or even the few blocks around the school. Students need to stretch and extend their skills and confidence in real life situations.

Jacob is not only successful in getting around for his job, but has traveled extensively abroad. He has been to Russia (including Siberia), Cuba, Mexico (Chiapas) and Japan with various groups. He was able to walk around Moscow on his own because of the confidence gained in his previous experiences.

I think it is imperative that students who are visually impaired or blind gain as much experience in the community as possible from a very early age. The extensive training in Orientation and Mobility needed to make someone a competent traveler takes many hours. I believe students need to have access to the community from preschool on. For many students the training, they need must be done after the school day to avoid impinging on their academic schedule.

I write this as the parent of a son with low vision and many additional disabilities who is a confident and competent traveler, both in his own community and the world. Since I am witness to his success, it is my utmost desire to see that other students receive the same opportunities he did to be able to explore and expand his world.

Sincerely,
Judith Lesner (Mother of Jacob Lesner-Buxton, MSW)

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What to Do With Feelings of Disappointment Over Disability

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There is a movement of positivity sweeping the disability community, and I love it. I think it’s empowering and life changing for those of us who have found ourselves stuck in cycles of denial, loneliness and even despair.  I love how people within communities like The Mighty can write about negative experiences and find the positive lessons within them. I am constantly learning something new and feeling encouraged.

But there are moments when I feel the gravity of my disability’s effects, and am flooded with disappointment. Like three months ago on Disneyland’s “Soaring Over the World” ride, in which I saw very little of the world over which we were soaring.

Having grown up legally blind, I am accustomed to not seeing the things other people see. I am used to smiling politely as people “ooh” and “ah” over stars in the sky, an adorable puppy wearing a sweater, the winning touchdown in a football game, etc. These missed sightings usually result in very little disappointment, but there are occasions when I feel side-swiped by disappointment, like at Disney.

We had waited in line for over two hours to experience the legendary “Soaring,” and I was excited to see what all the hype was about. I strapped my seatbelt on and squeezed my 6-year-old daughter’s hand with shared anticipation. But as the ride began, my excitement dwindled. There were no voice descriptions, and everything was extremely visual. Plus my husband, usually my extra set of eyes, was two seats away.  My neighbor leaned over occasionally, saying “African jungles!” or “Paris!” and tried to briefly describe them, but she was also trying to take in and enjoy the ride. And I realized with surprised sadness that I didn’t even want it described. I just wanted to see it.

The multisensory experience did include scents from each place, realistic breezes and sound effects, but the 3D effect that made everyone feel like they were actually flying was lost to me. The spread out images and colors that zipped toward my fellow riders like magic appeared to me as pixelated puzzle pieces that didn’t seem to form any recognizable picture. Something about the lighting and speed with which the images came made it impossible for me to see anything at all.

My two daughters, husband and neighbor exited the ride in awe, saying it was incredible.  I experienced portions of it, and still felt it was a neat experience, but nothing close to what everyone else raved about.

I was in the “happiest place on earth” and felt completely sad. But my sadness was followed by something worse: guilt.

Because I am a writer who loves to share insights about what living with vision loss has taught me, I felt guilty for feeling such sadness. I felt guilty for feeling something other than brave and grateful and positive. This feeling of disappointment in myself and my emotions seemed to increase my negative feelings exponentially. My sadness and guilt quickly turned into shame because of one searing thought: “There must be something wrong with me if I can’t look on the bright side all the time.”

I held that feeling in after Disney, not knowing what to do with it, and it squelched my desire to blog or write anything for The Mighty over the past couple months because I felt like a hypocrite. But then I came across a book that talked a lot about the benefits of negative emotion. Harvard psychologist Susan David talks about how our culture overvalues positivity in her book, “Emotional Agility,” stating “Research shows that attempting to minimize or ignore thoughts and emotions only serves to amplify them.”

In a recent podcast interview, Susan explains “Emotions have evolved to help us in the world, and with these emotions — even negative emotions — come gifts.” She goes on to explain that spending lots of energy trying to be positive can take away our ability to be authentic in our difficulty. “Sometimes when we’re spending so much time and energy trying to be positive, it takes away from having the real conversations we need to have with our family and friends.”

So when I felt that same feeling of disappointment resurface on a recent whale watching tour, I was a bit more prepared.  As the vessel rocked, and the other passengers skittered to one side of the boat to view a family of dolphins, I again felt an isolating disappointment over not seeing the sea life others raved about.

Fortunately my friend Mandy, who is also a trained therapist and extremely intuitive, was on the tour with us and sensed my disappointment. “How much of that were you able to see?” she asked as the boat pulled back into the dock.

“A shadow and change in the water here and there, but not much,” I admitted.

“Thank you for going,” she said simply, and her underlying intention was felt. She recognized that I came along to be with her and my family, to accompany them on an activity I wasn’t able to fully experience. She didn’t speak any further or try to add anything trite, such as “well, at least it’s sunny out!” or “at least you can hear the waves!” There was no trying to “make me feel better.” I sensed permission from her to feel whatever I needed to feel. And no judgment.

And so I let myself feel. I felt sad and disappointed. But I didn’t feel guilt over it, or shame.

I want to encourage my Mighty friends to sit with negative emotion from time to time without trying to stuff it or change it. Some things in life are disappointing, and so it’s OK —  refreshingly so — when someone in my community says, “this is hard.” It leaves room for me to connect and say “For me, too.”

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My Blindness Doesn't Make Me Inspirational

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I was diagnosed with retinitis pigmentosa at 14, but didn’t really start acknowledging the diagnosis and visual impairment until around age 20. That’s also when I started to hear that I was an inspiration. At that time and for a few years after, I didn’t really care; in fact, I thought it was sweet and a compliment to my ability to persevere and keep moving. But after learning about inspiration porn and getting told I was an inspiration many times when I was just doing average joe activities, I started looking at things a little differently.

Inspiration porn is when a person without a disability thinks a person with a disability is inspirational just because they live with a disability. That’s it… just them living is the sole reason they are called an inspiration.

Living as a blind person with retinitis pigmentosa is not inspirational. Most people would continue to live if they were diagnosed with such. Going through what I have had to go through to continue to live the life I want to live, taking orientation and mobility lessons and using adaptive technology is not inspirational. I did what I had to do to survive.

I am OK with you thinking the perspective I have taken on disability, the advocacy work I do related to disability, and the amazing opportunities I have been given and embrace are inspirational. But just because I continue to keep on trekking through this thing called life with a disability — that’s not inspirational.

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