The conversation around parenting and disability often follows the same tired path: nondisabled parents, disabled child, and a whole lot of “life-changing lessons.” But what about disabled people who decide to have kids? We’re not hearing their stories often enough — to the point that some able people might not realize they’re out there. Fortunately Lala, a 22-year-old nonbinary mother living in Florida, has plenty to say about that.
“I have Ehlers-Danlos Syndrome, Type 3. I’m a mother to a two-year-old boy, and I have an amazing and supportive cis male partner. Right now, however, we are fighting to reunify with our son due to a domestic incident. Being disabled is making the battle to get my son back even more difficult.
After I had my son, I got back into reading. Reading helps me cope with the fact that I have limited exposure to the world around me because of my physical disability and mental illnesses. Reading helps me to escape the dark mindset I have, and even helps me to dream peacefully.”
Read on for their insights on parenting while disabled, being out at work, and the importance of a good book.
Let’s start with your fiancé. Where did you meet?
We were part of a mingle group on Facebook — so I guess you could say it was kind of an unconventional way of meeting. But for a lot of disabled people like me, it’s not. It’s more than conventional; it’s perfect. I was actually with my ex at the time, so we were just Facebook friends. And after I went through a bad breakup with that person, he and I started talking seriously.
I was supposed to go to an Orlando meetup, and he was going to come from Miami. But then I got my first job, and thought I was going to be too busy working to make it. And so one day this big group of people, including him, made a surprise visit to my job. This is going to sound so cheesy — I’m not gonna say it was love at first sight — but when we actually met in person, something definitely clicked. It was a pretty fast move, but I felt it was right. We have a son now, our two-year-old.
That’s so great. Do you think it’s more common for disabled people to meet their partners online?
I don’t think it’s specifically about that; there’s a multitude of reasons why someone will befriend someone or meet a partner, and one of them is being disabled. For queer people, too, it’s a lot easier to find like-minded people online. There’s always the chance that we could get bullied, killed, whatever — any of those fears people have about outing themselves.
Even then, I’m afraid to tell some people that I’m disabled, because I don’t know what their reaction will be. Usually, the reaction I get is “Oh, but you don’t look disabled!”
I get that all the time.
Yes. So it made sense for me to find my friends and my fiancé online. It’s been a lot easier for me to be taken seriously online. When people find out how old I am, for example, they’re like “I wouldn’t have guessed! You’re so wise and mature for your age!” But offline, it’s much harder for me to be taken seriously. It’s a lot harder for me to find friends, it’s a lot harder for people who are older to take me seriously unless I’m with him.
I get teased for having a “chipmunk voice.” When I do disclose my disability, some people will really patronize me and treat me like I don’t know what I’m talking about or whatever.
Yes! I’ve always found getting people to take you seriously as an adult is one of the most difficult things. There’s a temptation to treat disabled people as perpetual children.
Once, a woman thought I was my own fiancé’s daughter because I was walking with a limp.
Yes. That was kind of embarrassing. I mean, there’s an age difference between us, but we look nothing alike. So… yeah.
You’re actually the first person I’ve talked to for this series who’s a parent. It can be such an emotionally charged thing for disabled people to have children. Talk about not getting taken seriously — parenthood is something people assume we’ll never want or be able to do successfully. What’s your experience been with that?
Before becoming a parent, I looked at parenting through rose-colored glasses — with an able-bodied person’s perspective. It was drilled into my head by other people, well-meaning as they were, that I probably shouldn’t have children. Because “Oh, what if you pass it on to them?” or “Oh, what if it’s too hard on your body to carry the fetus?” “What if you can’t pick up your child?”
Honestly, when I got with my fiancé, I was just like, “fuck it.” My symptoms are debilitating and they’re going to get worse as I age. I’d rather be a mom now than later. And plus, I’m fortunate that I got my diagnosis when I was nine; many, many people who have uteri don’t discover that they have Ehlers-Danlos Syndrome until they’re either pregnant, going into pre-term labor, or the baby is older and they’re also having issues.
Parenting while disabled is very interesting. We actually purchased our first baby carrier at Target when our son was about five months old. I only got to wear it one time; we take public transit everywhere, so usually it was Dad always wearing it, or we had the stroller. The one time I got to wear him was in a supermarket. He was so heavy! And I knew I couldn’t walk with him in it, so I sat down in the grocery scooter and strolled around the store carrying him. The looks I got were mixed; there were some, like, “Should she be doing that?” or “Aw, that’s so cute!” but in a very patronizing way. Or “… is that her baby?”
Do you find you have to justify yourself as a parent?
When I take him to doctor’s appointments, for example, I almost always have my fiancé with me. Again, we take public transit, or when we were on Medicaid, we got free transport to and from the appointments. So I didn’t really feel the need to justify myself in that situation. But when I was pregnant, my first OB didn’t take me seriously. I said that due to the nature of my disability, I should be labeled high risk. He didn’t really pay attention to me at all. I kind of felt like I was in a drive-thru: “Lemme see how you’re doing, baby’s good, okay great, get out. Next!”
It’s really hard for me to advocate for myself, and at that point my fiancé didn’t know much about EDS. Now he does; I even have him carrying around a little EDS information thing in his wallet.
If you talk about disability as a family issue, people assume that means the kid has the disability — and also that it’ll be a burden on the family. But it’s so much more complex than that.
That makes me think of something else I’m really hoping to see: more changing tables in gender neutral or men’s restrooms. They’re pretty common here, but this is a major city; if you go further out into smaller towns, they get a lot harder to find. Obviously as my son gets bigger, it’s harder for me to change him. So it’s almost always been my fiancé that has to change him, and some public restrooms just do not have changing tables. It’s unfair and absurd. There are so many reasons why every public restroom should have a changing table!
“We don’t have our own bathroom, we don’t have a kitchen, we don’t have a sink, we don’t have a toilet. Everyone in the building shares one microwave. I’ve noticed that a lot of us in this building have chronic illnesses, disabilities, or mental illnesses. There’s a lot to say about that.”
Do people ever say that it’s “so inspiring” that you have a kid?
To be honest, my fiancé kind of did at first. But he’s really been open to learning and listening to what I have to say. He says I’m inspiring for other reasons. But beyond that, no, I haven’t really been praised for being a parent and being disabled.
That’s surprising in a good way, actually. I would think people would get weird about that.
I’m sure they do. But I have to disclose my disability because I “don’t look like it,” so I’m able to kind of blend in. I’m sure if I used a wheelchair or my scooter full-time and had my son walking around beside me, people would say it’s “such an inspiration.” I wouldn’t be surprised.
Right now my son is in foster care. We’re supposed to be living somewhere that accepts children later this month, so that’s kind of a tight deadline to find a place. And we’re in a hard situation; I just started working my second job ever, and it’s only minimum wage. My fiancé works in IT, and people in that field typically make good money, but it’s been hard to save up for a place. Where we live is pretty much a shit motel. The landlord is overcharging everyone here. We don’t have our own bathroom, we don’t have a kitchen, we don’t have a sink, we don’t have a toilet. Everyone in the building shares one microwave. I’ve noticed that a lot of us in this building have chronic illnesses, disabilities, or mental illnesses. There’s a lot to say about that.
I’ve been having to unpack my own ableist thinking, and nothing’s been more eye-opening than living in this building and talking to the people here. Some people I talk to on a regular basis are the very same people I would have judged, or thought they were weird or odd or peculiar, and just not wanted to associate with whatsoever. But upon knowing who they are and why they’re struggling — often because they’re disabled and can’t find work, since no one wants to hire us — it’s made me reevaluate the way I looked at ableism.
Disability has such a harsh impact on employment and housing. Even though it’s technically illegal not to hire someone because of their disability, there are so many loopholes in the way that law gets applied.
I honestly go into work thinking “Could this be my last day?” Because even though my employer seems very understanding, when I finally disclose my disability, I’m afraid I’m just gonna go in and they’re gonna say “Sorry, we have to let you go.” And I’m not gonna know why, and I can’t prove that they fired me because of it. They can also fire you for being gay here.
So are you out as queer at work?
Several of my coworkers know that I’m bi, but not nonbinary. I still go with she/her pronouns. They already know that I’m disabled, and at least I can kind of present as cishet, but there are things I have to think about. Which would I rather disclose, and which would I rather keep hidden?
How long have you been out as nonbinary?
I’d say a little over a year now. I kind of kept it hidden until the Pulse tragedy, given how close it was to home. I went to an arts school that a lot of queer people tend to flock to, and I was worried, checking on Facebook to see if any of my friends were there. Hearing that it was on a Latinx night, being Latinx, it just made it even worse. I drank a lot the night after it happened, and I was freaking out.
I was staying at my friend’s house at the time, and I came out to my fiancé over Messenger. He told me that he would love me no matter what, and he said he was gonna be there for me until the end and meant it. I don’t mind that he still presents me as his wife, but he definitely recognizes that I’m genderqueer, and he’s been very understanding. I’m kind of hoping that he’ll help me get my first binder, because I really want one.
That would be awesome! It’s great that he’s been understanding. That’s by no means a given.
He was a lot worse when we first started dating; he was definitely more on the privileged side, to the point of not recognizing it. But I’m getting through to him. He’s started to help me pick out my haircuts — like now, I have an undercut, and he helped me pick that out. He gives me tips on how to style it and make it look better. It’s awesome.
There’s been some moments when we’ve really clashed, or he’s made transphobic statements about somebody else. But typically, we’ll have a quick argument, and later on or the next day have a heart-to-heart. And he’s been very understanding and perceptive to what I’m saying. It’s kind of hard for people who have intersecting, marginalized identities to find someone who can be wholly enlightened or totally aware. There’s always going to be those internal biases they don’t know that they have. So I try to think about it as “How can I frame this to help him see that wasn’t okay?”
“I love being able to read something that is fabricated from the author’s imagination. It’s amazing, it’s really a special craft.”
I also want to talk to you about reading. You mentioned that you hadn’t been reading in a while because of school, which is something I definitely relate to, and then you got back into reading after your son was born. Was it because you were reading to him, or just because you realized it was time?
Both. We got word books for him, and I was reading those almost every day. And I was like, “As much as I think these are really cute, I’m getting kind of bored reading the same thing over and over. I should really get back into reading.” So I checked out chapter books for children at the library. The first one I read to him was The Last of the Really Great Whangdoodles. I love that book. I hadn’t read it since I was in third grade, and it was such a treat reading it to my son. It was also a fantastic choice to get back into reading.
I’ve set reading goals for myself ever since my son was born, and I’m trying to reach those goals by New Year’s Eve. I’m trying to read 52 books, one every week. I’m on track so far.
Media representation of disability, especially disabled queer people and people of color, is sorely lacking. Have you ever read a book that you felt represented you in all of those identities?
I’ve felt I had to pick one identity and sacrifice the others. There are books with disabled protagonists that I might want to read, but they’re not really available in the library. I can’t remember the last time I looked up a book about a disabled character. I’ve kind of given up; it’s disheartening. I don’t tend to see books about characters who use wheelchairs or canes or have hearing aids or anything.
The Absolutely True Diary of a Part-Time Indian by Sherman Alexie is about a kid who, as he describes it, has water on his brain, and he’s intellectually disabled. Alexie is Native American, and so is the character. So it was very interesting to see those identities intersecting. The character describes how he didn’t feel at home on his own reservation because he was going to a white school, and he didn’t feel like he fit in at school because they were being racist toward him. The kids at home would call him retarded and everything, and it really tore me up, because I know what that’s like.
Ursula Le Guin said that stories are lies that tell the truth, and I think that’s very true. That’s exactly why I read. I love being able to read something that is fabricated from the author’s imagination. It’s amazing, it’s really a special craft. I love being able to see things from different perspectives, which I really think has helped me be more mindful of other people and understand where they’re coming from. Whether it’s fiction or nonfiction, I think that applies.
Reading has been an amazing way for me to just step outside my world for a second and be able to refresh my perspective. Especially since the election, it’s been helpful.
“I think love, for the marginalized person of intersecting identities, is being able to see past your own biases you’ve internalized to love that person and recognize difference. For a privileged person, it’s to be able to love unconditionally — because they should be loving unconditionally.”
What’s it been like, at the intersection of all of your identities, to live in this political environment so far?
It’s a complicated question, obviously. Because I can’t lie and say I’ve been harassed or discriminated against; I am light-skinned, and that affects things. I haven’t really experienced harassment, and I hope I don’t. I live in Miami, which is a diverse city, but a lot of people still voted for Trump. And even though I haven’t experienced harassment or racism personally, I can’t say that it doesn’t happen. A lot of white people, and even light-skinned people of color, tend to get that wrong about Miami. They think that because Miami has many different cultures and is very diverse, racism is not a thing here. That’s absolutely false.
I’m definitely not oblivious to the things going on in this state. I live right outside what used to be a predominantly black neighborhood, and now all you see are white people. It’s horrible how gentrification took over. They’re trying to convince people that this is the place to be, when there are homeless people sleeping at the foot of all these new paintings and murals and whatever. I experience more direct racism online than I do in my day to day life, but it’s very much alive here.
How can America be great when it was never great for people of color, for disabled people, for the sick, for the poor, for people with uteri? It just never was.
And finally, the big question I ask everyone in this series: what does love mean to you?
That’s honestly a tough question. Because if I say love is unconditional, and then one of the ways I cope is by saying “I hate my oppressors,” people will be like “You need to rise above and be better than that; otherwise, you’re just as bad as they are.” Okay, but there’s a power imbalance, so that’s not really true.
I think love, for the marginalized person of intersecting identities, is being able to see past your own biases you’ve internalized to love that person and recognize difference. For a privileged person, it’s to be able to love unconditionally — because they should be loving unconditionally.
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