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Why Latinx Kids Should Learn About Disability

Being a Titi was one of my first titles the moment I was born. Having five older sisters, I was born with a good amount of sobrinos. Aside from my regular Titi duties of taking care of my fifteen nieces and nephews and making sure they stay out of trouble, from birth until now I’ve been teaching them about my disability and how to treat disabled people. It was not only important for them as Latinx kids to know about disability, but as I got older I realized it’s important we teach Latinx kids that Disabled Latinx exists.

We all know when kids are young, they’re still learning boundaries and sometimes accidents can happen where someone could get hurt.

Photo courtesy of Andrea Lausell

Since a majority of my nieces and nephews are close to my age, they became my buddies I’d play with whenever they’d visit. From the start, I knew that I had to make sure they never accidentally hit my back. The smallest smack to my back causes me pain and in some cases temporarily stops me from having use of my legs. So making sure that sobrinos learned to be careful around me was a top priority while also making sure they didn’t have a fear of playing with me. But even though for my age my vocabulary was very medical thanks to being in and out of the hospital, I knew my nieces and nephews wouldn’t understand the medical lingo. So depending on their age, I explained my disability in a way that would make sense to them.

When they were very little, I knew big words wouldn’t help them understand that my back needed to be safe. But visually they understood much more, so I would show them my scar and they would ask me what was wrong. I would respond by explaining that it was a wound that needed to be cared for gently. That was all that it took for them to understand, with occasional reminders. As they got older is when we told them more details about my Spina Bifida and my surgeries and I was able to fully explain to them my needs and how they can be an ally to me. While also explaining that my disability wasn’t bad but something that should be celebrated because it made me who I was.

Most of my sobrinos now are teenagers or are in their twenties, so they’re pretty good at understanding my needs as their Disabled Titi and standing up for disability rights.

Photo courtesy of Andrea Lausell

But now as an adult meeting other Latinx families that aren’t my own, I’ve realized that my family has become an outlier in the Latinx community. Unlike my family where disability wasn’t something surprising or new, I realized a lot of Latinx families don’t talk about disability with their kids and then those kids grow up to be the people who express their shock with me when they find out I’m disabled y Latina!

My adult years have been filled with explaining to strangers about my identities as if I were a mythical creature but so much time would have been saved if we as a community didn’t shy away from teaching our kids about disability in the first place. There’s a fear that acknowledging disability as part of the natural diversity of people means that we accept that being disabled is okay. So we hide disability as much as we can. I remember an ex novio of mine sharing a story of when he was a young child visiting family in Mexico, he had a cousin who was disabled but he didn’t know much about his cousin. His family would hide his cousin in another room and not let the kids play with him out of shame and maybe protecting the abled kids. We pass down the idea to kids that something is wrong and believe that kids will understand disability is wrong better than just explaining what disability is and allowing them to speak to Disabled Latinx. But because we hide everything, kids grow up with prejudices against people who are disabled but that can change.

That same ex novio had twin cousins who were young that visited us often. One day one of the twins noticed the scar on my back and asked me about. Their entire family didn’t know how to answer but because of my past experience, I was able to explain to them. I told them the name of my disability, made sure to explain that I was disabled and that my scar was there because I had a surgery to help “fix” my back. I made it clear that I was available to answer any questions they might have at any time, and ultimately they did come to me with questions.

Most Latinx families don’t give their kids room to ask questions for fear that they might insult a disabled person or out of their own uncomfortableness with disabilities.

The thing is, if we treat our kids with respect and respect their natural openness to learn, we can explain disability to them in a way they will understand. Especially if we let disabled family members explain to kids what their disability is. After all, Disabled Latinx were once kids as well and had to learn about their disability too, so they’ll be able to make sure kids understand.

If we teach our young kids about Disabled people, especially Disabled Latinx, we teach them that there’s nothing wrong with being disabled. We teach them compassion for the diversity of people and most importantly when we teach them from a young age how to be allies. They will learn to not only stand up for human rights but disability rights. They will grow up to help us all fight for a better future for everyone. Children will be able to understand and learn to accept different identities from their own when you explain disability to them. It just needs to be explained in a way that reflects their age at the moment so they can understand. How my family taught and continues to teach the young kids in our family about disability, has been proof of that. We’ve never shied away from my identities and how they impacted our family. We’ve allowed my sobrinos to ask questions if they didn’t understand aspects of my disability. We’d let them come to visit me in the hospital and see my scar as beautiful and not a tragedy.

Most of my sobrinos are adults now and I’m very proud of the powerful and compassionate Latinx they’ve become. I’ve seen them become open and accepting to everyone they’ve come in contact with. I’ve seen them support and love their Disabled Titi and stand beside me as I fight for accessibility and Disability rights. My sobrinos wouldn’t have been the amazing Latinx people they are today if my mother and I didn’t teach them to learn and embrace my disability. There is too much hate, fear, and violence in this world from our community towards Disabled Latinx. Still, if we teach our children young, the generation that will grow up to replace us that everyone is different and that disability is part of that diversity and there’s nothing wrong with it, we allow our future generations to continue a bit better than where we left off. We owe our future generations that, our disabled and abled Latinx generations.


Read: Latina Reads: Meet Bronx-Based Boricua Poet Gretchen Gomez

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20 Things Disabled Latinx Are Tired Of Hearing From Their Familia

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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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For Years I Refused To Speak Spanish Because Of How It Patronized My Disability

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For Years I Refused To Speak Spanish Because Of How It Patronized My Disability

Like many first-generation Latinx kids in the United States, I grew up in a bilingual home. My mother and father spoke primarily English to my sisters and me while speaking Spanish whenever we were in New York visiting our Abuelos. Wela (my mother’s mom) also lived with us and she only spoke Spanish. My sisters had always been better at expressing themselves in Spanish than me, mainly because I had to focus on making sure my English was perfect. Having been born with Spina Bifida, I learned at a young age how to be the go-between for my doctors at the hospital who didn’t speak my family’s native tongue. It was imperative that I be able to communicate with my doctors well enough to make sure my parents also understood them in case something became lost in translation.

Growing up in a very English speaking environment meant that while my English was getting stronger, my Spanish suffered a bit and I began to have negative feelings about it.

Photo: Andrea Lausell

I felt ashamed my Spanish was beginning to be difficult for me to use even though I understood it just fine. As I grew up and explored my Disabled identity in English when I needed to explain who I was to my family, peers, and strangers, I realized I couldn’t explain who I was in Spanish. Eventually, I began to feel as if the Spanish language didn’t actually want people to know who I was as a Disabled Latina.

For the English speaking Disabled community, we’ve managed to take back the word“disabled” and to embrace it.

We welcome it as an identity and as a way to explain that we have a disability that requires accessibility. The word “disabled” isn’t a bad word for us, it’s a word filled with a rich history and supportive community. And in the community, we’ve developed different ways to identify ourselves either as a “disabled person” or a “person with a disability”. For myself personally, I don’t like using I’m a “person with a disability”, I prefer identity first language. But regardless of how a disabled person wants to identify, the bottom line is that our disability or disabilities end up being a big part of who we are. It’s a big part of who I am, no matter what I do in life and how I succeed.

In English it’s always been easy to explain who I am, but Spanish is another story. When I was a child, I noticed that whenever my parents and I talked about my disability we only did it in English. When English was used to talk about my Spina Bifida, it was always very medical but also caring. There was a softness and reassurance in my parents’ voices as they helped guide me in understanding and accepting who I was as a disabled person. In Spanis,h though my disability was rarely brought up and if we needed to explain something to family members who only spoke Spanish, it was explained as simply “bad back problems”. But there never was anything positive in the tone when it was “explained”. It always came with some pity followed by my family saying “ay bendito” to me.

I always knew there had to be words in Spanish that could explain my disability.

Photo: Andrea Lausell

Of course, you have the words for disabled like “discapacitado”, “incapacitado”, and “discapaz”. But I noticed a huge difference when using those words in Spanish verses saying “Disabled” in English. The difference was the connotation of “discapacitado” having the meaning of “malo” which is the direct opposite of the reclaimed word “disabled” in English. I think the reasoning as to why I don’t know much about disability related language in Spanish and probably why my family avoided saying it had to do with my parents not knowing the right word to say that reflected how they felt when they spoke to me in English. Therefore they had no way to teach me how to talk about myself fully in Spanish. That’s not their fault though, I was the first disabled person (that we know of) to be born in our family. They never needed to use disability language before me. When you also look at our Latinx culture and the history of how disability is viewed, it’s important to note that it’s engraved in our culture to look at disability as something to be pitied. The disabled become “el pobre” or “pobrecitas.” This belief is supported by the Latinx communities deeply rooted Catholic philosophies and influences, from the classic ableist stories of the Deaf and blind being “healed”. We’ve convinced ourselves as a community to see disabled people as those who are living sad lives because they’re disabled while also using them as a sort of inspiration porn: a reminder to “live your life to the fullest because after all, it could be worse, you could be disabled”. The reality, however, is that when disabled people do actually experience these “miserable lives” it’s because abled people have a created a world that is inaccessible to us.

For a good amount of my adolescent years, I began to reject Spanish because of how it subconsciously began to groom me into feeling as if my disability was something to feel ashamed about.

Ultimately, after a while, I refused to speak it unless I was talking to my Abuelos. Speaking the language ultimately began to make me feel unhappy because it felt like a language that could only be used as long as I didn’t talk about one of the biggest parts of me. As time has gone on, and I’ve become content in my identity as a Disabled Latina, I don’t entirely have negative feelings about speaking about my disability in Spanish. I’ve realized it’s not impossible to explain my Disabled identity especially as the Disabled Latin community slowly but surely manages to change the narrative of how the Latinx community views us by altering the meaning of very ableist words in Spanish. As long as I keep speaking Spanish to those around me, I feel confident I can help to make this change. Now, when I’m met with “ay benditos” as a response to someone finding out that I’m disabled, I’ll show them with my words that being “discapaz” is amazing and one of the best things about me.


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