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20 Things Disabled Latinx Are Tired Of Hearing From Their Familia

Handling a disability can be particularly disturbing when you’re a Latina. While we know our family means well, sometimes the things they say to us can be just plain mean and harmful. A lot of it stems from our culture not understanding disability and seeing it as something bad. Being disabled isn’t bad, it’s the lack of accessibility for us that makes people think it is. Life is great being disabled, sometimes it’s difficult but overall most of us are happy with our lives. The only thing that would make it better if some of our family would stop saying the following:

1) Estas bien, hay gente que esta peor que tú

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We’ve all heard this before, “there’s always someone worse off”. And while this is probably true, everyone’s reality is different. Comparing a disabled person’s experience to others doesn’t change the fact that your family member is going through a hard time. And this phrase is only going to make them feel worse than they might already do about themselves. Instead of dismissing what they’re going through, just ask how you can help.

2) You’re not praying hard enough

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Listen, some Disabled Latinx are religious and some aren’t but saying that we’re not praying hard enough in order to “feel better” or be healed is really messed up. For those of us that believe in God, we know he helps us in ways that only we understand, but praying isn’t going to magically cure us. Praying helps as a way to vent our troubles but what we really need is your support and access to good healthcare. Praying isn’t going to do that. 

3) Mira, tu prima is vegan and it cured her *insert illness*, maybe try that 

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We can’t deny that a vegan diet has helped many people with their illnesses or have overall improved someone’s health. That’s great for them, but that doesn’t mean it’s a cure all for disabled people. All of your primos could be vegan and be “healthy” that doesn’t mean our body is going to react the same. It may ease some of our symptoms but trust us, a vegan diet isn’t going to cure us and we’re tired of you reminding us that it helped our cousins. 

4) All you do is sleep! 

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Listen, being disabled is exhausting. Everything we do, even if it seems simple can be very draining when you’re dealing with chronic pain. Sleep isn’t something we’re doing to be antisocial or to skip setting la mesa for dinner. Sleep is helping us conserve and recover our energy that we lost from doing our daily tasks. But yelling at us that all we do is sleep is invalidating of our experiences and makes us feel bad. If it were up to us, we’d love to be present all the time, but we can’t if we want to keep our body going. 

5) Mentirosa, you were fine yesterday! 

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I know, I know, yesterday I was having fun with the family and I seemed to be doing well. But that was then this is now. Disability is fluid and some days are really good and some days aren’t. It’s a gamble for many of us who are disabled when we wake up in the morning. But instead of being upset that today we can’t do anything with the family because we need to rest, be happy for the days when our symptoms ease up and let us spend time together. 

6) Have you tried yoga? 

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I’m just gunna make this quick and simple, YOGA DOES NOT, I REPEAT, DOES NOT CURE DISABILITY. Sure, it may help ease some people’s symptoms but listen to us when we tell you we’ve tried it and it doesn’t work for us. 

7) Ponte de Vaporú 

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Mami, Abuela, Titi….please don’t get mad when I tell you this but vaporú isn’t going to fix this. We know vaporú is the reason generations of our family hasn’t died, but the most vaporú will do is clear our sinuses, it won’t fix our pain. You can still put vaporú on us…just maybe by some motrin as well? 

8) You’re not a vieja, you don’t know pain 

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You don’t have to be old to be in pain. Young disabled people exist and we deal with pain the same as our abuelos. The only difference is we didn’t have to age to get like that. Please don’t dismiss our pain by telling us that we couldn’t possible have it or understand the aches unless we were old. It just adds more pain to us listening to you lecture us. 

9)  Ay, bendito 

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This phrase is the most insincere “poor baby, get over” thing you could say to us. Sure, maybe you mean well by thinking you’re sympathising but this comes across as you not wanting to engage. Talk with us about our experiences with our pain and disability but don’t deflect by saying “ay bendito”. We don’t need sympathy here, we need empathy. 

10) Don’t talk about your illness, it makes me sad 

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Please remember famila that while your feelings are valid and we know that our pain does make you upset because you feel helpless, telling us not to express what we’re going through because it “upsets you” is sh*t. If we can’t confide in our family, then who can we talk to? We will give you room to process your feelings but we need your love and support and sometimes that means putting your feelings on the back burner with the frijoles, so you can be there for us when we need it. 

11) The doctor knows more 

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Doctors know a lot considering how long they spend in school and I know you trust what they say but they don’t know everything. And they definitely don’t know what it’s like to live in a disabled body. A lot of times our experiences don’t match what doctors think they know about our disability. While it’s okay to take what the doctor says into consideration, please listen to us too. We are the ones who know our bodies the best. 

12) Natural medicine will cure you 

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Medicina natural can cure a lot of simple things like the common cold and sure it may even help ease our pain. But telling us that it’ll cure us and do a better job than modern medicine is wishful thinking. If natural medicine could cure us, we would of taken it a long time ago. Modern medicine isn’t evil (the companies behind it are but that’s a topic for another time) and neither is natural medicine. They can work together to help ease our pain but they won’t cure us. 

13) It’s all in your head 

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Mental illness is definitely in someone’s head, but that doesn’t mean it’s not real. Mental illness, chronic pain and any other disability isn’t something we’re making up for fun or attention. They serious things that should be treated as so. Dismissing us when we tell you something is wrong is just going to make things worse and make it harder to seek the help we need. Believe us when we tell you something is wrong. 

14) Only white people have that 

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Contrary to what people believe thanks to media making #DisabilityTooWhite, disability/mental illness isn’t “just a white people thing”. Disability is present in all races and ethnicities. By not only dismissing this fact in general, you’re telling us that you don’t believe we are sick. This mindset is the reason so many disabled Latinx/PoC are less likely to access the proper healthcare needed to care for our illness. 

15) Why are you using your *insert mobility aid*, you’re giving up 

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I promise you, using a wheelchair, cane, braces anything that’s a mobility aid isn’t us giving up. In fact, our aid gives us the freedom to enjoy being with you during parties or vacations. Without our aids, it will be difficult to walk and as much as you want us to walk with no “problems” that’s not going to happen. Look at our aids as something positive, without them we’d be stuck in our room and never “experiencing life” the way you so desperately want us to do. 

16) You’re doing this to hurt me 

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For many Disabled Latinx, we have a deep love for our family and only want the best for them. The last thing we want to do is hurt anyone, but saying that our disability is hurting you because you’re “upset” when we can’t do something or you think we’re not “trying hard enough” is abusive. You’re making our disability and our life about you and your feelings when it has nothing to do with you. It’s saying that our existence is troublesome for you, and that’s not the unconditional love families like to talk about having for one another. You’re allowed to feel upset but remember that our disability isn’t and will never be about you or there to hurt you. 

17) Nena, you’re too pretty to be in this much pain 

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Hold up, so you’re saying disabled people can’t be pretty because they’re disabled? Being pretty doesn’t matter when it comes to chronic pain or disability. You could be the biggest supermodel in the world and still deal with chronic pain. Once again, saying we’re too pretty to be in pain is dismissing our experience instead of acknowledging and supporting us. 

18) Put some makeup on, you’ll feel better 

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I love putting makeup on like anyone else, and sure it lifts my spirits up when I do. But if we tell you we’re hurting or we need to take our time with something because we’re having a bad day, just telling us to “freshen up” and that’ll make all our problems go away is hurtful. It doesn’t help us by saying this, so just stop and ask what can make us feel better. 

19) You’re not disabled mija, you can do so much! 

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Let me make this as clear as possible, DISABILITY ISN’T A BAD THING. Admitting to yourself that we can’t do some things doesn’t take away from what we can do. It’s important to recognize that our disability will stop us from doing things but that’s the same for people who aren’t disabled. There are still things you can’t do either, but that’s not a bad thing. Ignoring our limits as disabled people and only focusing on “what we can do” can put us in danger if you force us to do something we’re not able to do. 

20) I didn’t want this life for you 

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As parents, you’ve probably had an idea of what your hija’s life would be like and disability wasn’t a part of that idea. And that’s okay but the reality is, we’re disabled and that’s also okay. You may have not wanted this life for us but it is what it is. Disability doesn’t mean our life isn’t going to be amazing, it just means it’s going to be different from your experience and that’s fine. As long as we work on making things accessible, we will thrive and live a better life than you ever planned for us.


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Día De Los Reyes Was The First Time I Allowed My S.O. To Experience My Culture

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Día De Los Reyes Was The First Time I Allowed My S.O. To Experience My Culture

For many who regularly take part in the holiday season, Christmas traditions are strongly tied to religious beliefs and practices. The ways in which the customs around the holiday season are carried out often deeply rooted in cultural rituals and they often vary from family to family. For my Puerto Rican family, the holiday season is drawn out well past the first of January when radio stations reel back on the jingles and Mariah Carey classics. For us, the Twelve Days Of Christmas sales or songs we know of don’t relate to the days leading up to December 25, but rather the twelve days in between Christmas Day and January 6 The Epiphany, a biblical day that marks the final leg of the  Three Wise Men’s journey to deliver gold, frankincense and myrrh to Jesus Christ.

Día De Los Reyes has always been an especially important day for my family. The fact that “reyes” is my mother’s maiden name has only made the day a little sweeter.

Photo provided by Wandy Felicita Ortiz

A more popular holiday back on the island, my abuela and abuelo Reyes brought their traditions to the mainland with them in the 1950s.

On the evening of January 5, each member of my family from grandfather to my youngest sobrino pull out cardboard shoe and clothing boxes (all marked with our names, drawn on and decorated over the years with crayons, markers, and glitter pens) to take part in a tradition that we hold dear in our hearts. After we’ve filled the boxes with snacks like carrots, lettuce, and sometimes grass for the Three Kings’ camels to munch on as they pass through our town we stick the boxes under our beds. Finally, just as we would with Santa Claus, we write the Three Kings–Los Reyes–a handwritten note wishing them safe travels as the journey to see the baby Jesus hoping that as they did with him on that first Epiphany, they’ll leave a small gift or token of some sort under our boxes.

Dia De Los Reyes functions similarly to Christmas Eve in my family. We all wake up and check under our boxes to see if we were good enough this year to receive any gifts. We’d go to mass together, where as kids we’d hope that maybe Los Reyes stayed in town with their camels long enough that day to be at the church community center to pose for photos. We would visit family and eat pernil and arroz con gandules, dishes reserved for celebrations and holidays.

As I got older I went to mass only sometimes and stopped looking to get my photos with Los Reyes.

Photo provided by Wandy Felicita Ortiz

I never stopped checking my box for gifts though, or remembering each rey by the names older relatives taught me to write in my letters: Balthasar, Melchior, and Gaspar. As an adult I focused on new ways to celebrate “being a king,” as my family would say, and took on the role of expert coquito maker.

When I started dating and began wanting to bring boyfriends home for the holidays, part of my new role during the holiday season also unintentionally became one of both gatekeeper and teacher of my Puerto Rican culture. As a sophomore in college, I brought my then boyfriend home for December for the first time. In my household, Noche Buena, Christmas Day, New Years Day, New Year’s Eve, and Dia De Los Reyes were all days set aside for family, exclusively. I knew not to ask for exceptions, and in the past had willfully or grudgingly passed up holiday and New Years parties to honor the expectation of being en familia.

But in my twenties I badly started to yearn for my first New Years kiss and wanted, even more, to share part of my twelve days of Christmas with somebody who mattered to me.

My parents, on the other hand, were hesitant. Dia De Los Reyes was about Los Reyes, as in my family.

My boyfriend was someone they saw a few times a year and knew of only from phone calls, letters, texts, and video chats. Someone so unfamiliar certainly wasn’t considered family, and moreover someone who wasn’t Latino couldn’t possibly understand the sanctity of the day we’d honored so lovingly all our lives.

Most concerning of all, Dia De Los Reyes is also known among some circles as “the poor man’s Christmas,” my grandparents’ explanation being that back in the days of Jesus, being a king didn’t mean wealth like it means today. It meant that the giftschildren and observers receive in their boxes today are small, like a $10 gift card, socks, some mittens, or maybe candy. The last thing my family needed was for some guy they didn’t know to reach into an old shoebox of all things, pull out socks, and think we were cheap. With some convincing and a little grumbling, my family allowed me to write my boyfriend’s name on a box, fill it with lettuce and put it under my bed on January 5.

That night as I lay in bed, I did feel nervous knowing that I was bringing somebody into such a special part of my life that no one had ever seen before outside of my parents. Earlier in the day, I made sure to explain to him how seriously my family took our family only traditions, and how it wasn’t just about the religious holiday but the namesake that ties us to one another. I felt silly as I highlighted decorating beat-up boxes as one of my favorite traditions, something I hadn’t ever admitted out loud. Quiet and reserved, he listened to my stories but didn’t ask any questions.

In the morning, I still had my family only morning mass and our opening of gifts, but later that day my boyfriend was invited over for pasteles, coquito, and the checking of his first and only Three Kings Day box.

My parents observed with critical eyes as he went through the motions of our traditions, seeming charmed by the gifts of a hat and gloves left resting on top of torn up shreds of lettuce, proof that Los Reyes had come through our house. As he followed our lead I sat hoping that by participating in the events himself, he might better understand where my love for my culture comes from, or maybe even briefly feel the same sense of childhood joy I do on that day each year. Admittedly, it was an awkward day for everyone involved and not filled with all the magic I had hoped for. Nonetheless, I still felt proud of myself for being able to break down a barrier that had long existed between myself and not only romantic connections but a friend, too.

I wanted the opportunity to show those outside of my family the part of my identity that I hadn’t always made transparent in my daily life, even if that meant that they didn’t understand or wouldn’t “get it” at first.

Photo provided by Wandy Felicita Ortiz

Even though the person who got to take the test run of my family only traditions and I aren’t together anymore, a few years ago he broke the mold for being able to bring others into a part of my life I was using to shutting so many close to me out of.n Maybe he did think that of us, our gifts, or the day we celebrate as cheap, but after the fact I, didn’t care. In the years that have followed, what has mattered most to me has been that I could start sharing Reyes, this name that laid down the foundation to who I am before I was ever born, and all the nuances that come with it with those I want to know me better.

This Dia De Los Reyes will be one of a few Reyes family festivities that my current boyfriend will be participating in, and another year where my family pulls out his box and welcomes his extra cheer into our holidays. While he’s still learning about my roots, I’m still learning that I can take these moments and use them to bring myself closer to my culture and my loved ones.


Read: Twitter’s Latest Hashtag Fights Back Against The Normalization Of Death And Violence Against Migrant Youth

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Walking With The Dead On Día de Los Muertos

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Walking With The Dead On Día de Los Muertos

On Día de los Muertos, we respect and honor the dead. But it’s a hard day for me to celebrate in the Bay Area, when the dead and soon to be dead walk around me. When I see ofrendas for Alex Nieto, he reminds me of my uncle, with his 49ers jersey and his belief: I grew up here, I belong here, no one can take that away from me. Or, when I see that after 46 years, Galería De La Raza will be evicted as if anyone has the right to evict culture, evict spirit, evict the people who built La Mission. Still, now when I see parts of my life, culture, and home taken from me and the community I grew up in I often find myself wondering what is there to celebrate. Is Día de los Muertos for the living, or a prayer to take us away from the land of the walking dead?

These days, I try to let go of what Día de los Muertos has come to mean in the United States. Instead, I hold onto what it means in Mexico. It’s a rebirth, and a day to remember those who we will always carry with us.

The week my abuela was taken away from us, she visited us twice.

My tía and I were two ghosts watching Pedro Almodovar’s film, “Habla Con Ella,” (Talk to Her) in my tia’s bed. We were wrapped like two swaddled babies in perfectly crisp linen sheets, neatly stacked upon each other like layers of a pastel de tres leches, and topped with an intricate, multi colored quilt. It smelled just like my abuela’s bed; of detergent, talcum powder, and lily of the valley. A perfume you could never bottle.

In the film we were watching two lovers realize it’s the end of their relationship. But, before they breakup beneath a veranda under the Spanish sky, the Brazilian singer and guitarist Caetano Veloso serenades them:

Dicen que por las noches                         

No mas se le iba en puro llorar               

Dicen que no comía…

My aunt began mouthing the words, “No mas se le iba en puro tomar.” And as I looked at her, I could see her as a little girl, singing the words of a song her mother taught her. “This was your abuela’s favorite song,” she told me.

“Cucurrucucu Paloma.”

When I get visions of my grandmother, she comes to me like a white dove. When you see a white dove — it’s as if it clears the sky. As if its wings are backlit by a cloudless cielo. Turtle doves are often associated with romance. For me, I think of magic and my abuela. I think of her green thumb, and the jasmine blossoms, and the lemon tree that sprung from it. That lemon tree gave us fruit all year round. These are the things I dreamed of when Paloma Blanca, or white dove, first visited my family.

Later, I sat with my mama and tía at La Taqueria, one of my abuela’s favorite spots in the Mission. As we ate our tacos, yet another one of my abuela’s favorite songs came on the jukebox. My mama and tia burst into tears and ran out of the taqueria, tacos uneaten. I followed them out onto that Mission street that felt like a skeleton of what it was in my youth.

Instead of paleterias, we got tasting menus. Instead of affordable housing, we got luxury condos. Instead of life, we got death.

“Cucurrucucu Paloma” is a song about a husband mourning his wife leaving him.

He spends his nights looking for her and crying in the home they once shared together. After his death, he is reborn as a dove that coos every morning, searching for her.

That is quite literally the story. But that story is not real to me. So, I have given the song a different meaning.

In my reinterpretation, the song is about a husband who never appreciated his wife. He spends his nights in the cantina and out with other women. One night, she dies of a broken heart. And her spirit haunts him in the form of a dove. That dove visits him every morning and sings for him. He sings back to her, asking her for forgiveness, and begging to join her. Instead, she pays her daily visits and her songs sound more like cries.

We are all haunted by voices no one else can hear.

Sometimes the soul of a person appears to you.

Sometimes it’s her presence you feel, cooking alongside you. Other times, it’s in a dream.

For me and my family, my abuela often appeared as an animal. My tía had the world’s sweetest, most capricciosa chihuahua, Lolita. She was a cloud of thin white fur, with two light brown patches, and eyes the color of unrefined cane sugar, piloncillo. Whenever we made eye-contact, she’d wriggle towards me, and slide onto my shoulder, her head pressed against my heart.

I was able to make little cries, chiadas, that sounded like puppy cries. I would whimper as loudly as I could, and Lolita would join me, and she would tell me her penas, her worries. My whole family would laugh as I hugged Lola and the two of us told each other secrets no one else understood.

I loved that little dog and always thought: what a gift to have my favorite creature visit me twice in one lifetime. What a gift to understand her cries.

“Cucurrucucu Paloma” was originally written by the Mexican songwriter Tomás Méndez for the ranchera singer, Lola Beltrán in the 1950s.

Photo provided by Michelle Threadgould

It is a classic mariachi song covered by everyone from Joan Baez to the Chilean jazz singer, Camila Meza.

But no one quite owns the song like Caetano. In 2014, I saw him perform for the first time at the Hollywood Bowl. He was 71, with the same brushed-back, all white hair of my abuela, and the same seventies style glasses. And yet, even in his seventies, he possessed the energy of David Byrne, who dances, improvises, and keeps his performers on their toes as he makes it clear: this stage is mine.

Juran que el mismo cielo

Se estremecía al oír su llanto

Cómo sufrió por ella

Y hasta en su muerte la fue llamando

Like the character in “Cucurrucucu Paloma,” waiting for their dove, we all leaned in to hear his song. But in this canto of memory and longing, I didn’t feel the suffering. Instead, a song that had once helped me to process lost worlds had new meaning. It was a tribute, a calling in of the ancestors, and I could feel her presence there in the open amphitheater. As Caetano danced onstage, I knew that she was quietly shuffling next to me, and would be for as long as I could appreciate her song.

This year, for Día de los Muertos, I will light a Saint Judas candle for my abuela.

Photo provided by Michelle Threadgould

I will play “Cucurrucucu Paloma,” and Selena, and Nirvana Unplugged. My abuela used to call Kurt Cobain a living Jesus, and sometimes I think faith is inherited, because I still believe her.

On her ofrenda, filled with marigolds and sugar skulls, I will write a prayer, a spell: May we hold onto what is left of our culture. May La Mission live on. May we never feel like the walking dead in our home.

Amen.


Read: Get Some Ofrenda Inspo with These Altars Honoring Our Ancestors for Día de los Muertos

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