Larissa Martin

@larissa-martin | contributor
Hi everyone My name is Larissa I am a person with a disability I have CP an am an amputee but I don’t let any of that define me and what I am able to do an accomplish due to my disability I'm a writer activist of many things and All and all Just a lover of life.
Larissa Martin

Alma's Way's Eddie and Disability Representation in Children's TV

The new PBS KIDS show “Alma’s Way” follows a little girl who lives with her family in the coolest borough in the Bronx as she learns important lessons about life while having fun with her friends in the neighborhood. Eddie Mambo is the 6-year-old cousin of the main character — and he has cerebral palsy. Seeing a character who looks like me matters because when I was growing up with cerebral palsy, I never saw characters with disabilities. It is refreshing to see that this generation of kids with disabilities will be able to see someone who represents them. I recently had the opportunity to get a sneak peek of Eddie’s first appearance in the show, and I absolutely loved that they put Eddie before his disability. Showing the person first is rare for TV shows — usually, they put a character’s disability before the actual character. Eddie is a much-needed change for a TV character with a disability, and this conversation around disability on the show needs to be continued. In honor of Eddie’s first appearance on the show on May 5, I was recently given the opportunity to speak with the supervising producer on “Alma’s Way,” Olubunmi Mia Olufemi, and I also spoke with Dr. Mary Louise Russell, the pediatric rehabilitation physician who helped make sure Eddie’s portrayal was accurate. Here’s what they had to say: Responses have been lightly edited for clarity. LARISSA MARTIN: What inspired you to include this character in the show? Will there be more characters with disabilities moving forward? OLUBUNMI MIA OLUFEMI: Eddie Mambo is inspired by two people from “Alma’s Way” creator Sonia Manzano’s life: her close cousin, Eddie “Guagua” Rivera, who was a talented bassist and a pioneer in Salsa and Latin jazz and another boy from her neighborhood named Dennis, who had polio and loved to dance. Sonia always tells an amazing story about Dennis twirling two women around the floor while doing the mambo. When developing “Alma’s Way,” it was important to Sonia and executive producer Ellen Doherty to include a main character with a visible disability. This opportunity came in the form of Eddie, Alma’s “primo-amigo” (“cousin-friend”), who is a combination of these two real-life people. As we plan ahead for future seasons of “Alma,” we have created storylines for a young girl who uses a wheelchair whom viewers have already seen in the background of the first season, and we also plan to work with advisors to develop storylines around a character who will be deaf or hard of hearing. Typically, when we are introduced to a disabled character on a children’s show, their disability is the focus of the show. What made you decide to focus on Eddie’s interests instead of his disability? On “Alma’s Way,” we approach our storytelling in a way that is realistic and authentic. For Alma, Eddie, and Junior, Eddie’s use of braces and crutches is a well-known fact of life. Nothing about this is new or foreign to them in a way that requires additional explanation. So while Eddie having cerebral palsy is an important part of who he is, we haven’t found it necessary to call out his diagnosis in that way. Instead, we’ve focused on showing viewers what Eddie’s cerebral palsy means for him in everyday life. Kids will notice that Eddie can walk short distances without his crutches but that for longer walks to baseball games and visits to the park, he’ll grab his “sticks” to help him along. When he plays the trumpet with his band, he keeps a stool close by him in case he gets tired and needs to sit down. He’s teaching himself to play a mini tuba instead of a full sized one because carrying over 10 pounds is difficult for him to do. And when he dances the tango with Becka, he leads, but Becka makes sure to give him extra stability by wrapping her arm under his and curving it behind his back to support his upper body. One day, we plan to tell a story in which our characters discuss cerebral palsy and what that means for Eddie, but we will do so in a way that is natural and makes sense for the storyline and our world. What impact do you think Eddie will have not just on your audience but on representation for children with disabilities? We’re happy to bring Eddie’s reality to the television screen for kids both with and without disabilities who may or may not know about cerebral palsy. Eddie’s an amazing kid, and we think anyone who sees the show will say, “I totally want to hang out with that guy!” But he’s also just one character with disabilities — albeit one we worked really hard to create and are still actively developing. At the start of the show, we worked with medical advisors who created a detailed medical history covering Eddie’s birth, cognitive and physical development, and physical therapy. Throughout production, our medical advisor, Dr. Mary Louise Russell, reviews all of Eddie’s storylines, animation, and designs for accuracy. A few episodes in, we showed Eddie’s animation to seven children with varying cerebral palsy diagnoses and their families to get their honest thoughts on Eddie’s animation and representation. We received a lot of great feedback and recommendations that we were able to incorporate into his animation immediately. We also worked with a young teenager with the same diagnosis as Eddie to create several reference videos for our animators displaying his range of motion for activities like climbing stairs, sitting, running with crutches, and dancing. What is your favorite thing about Eddie and what are you most excited for your audience to see about him? Eddie’s got an amazing set of musical skills, and he’s a phenomenal dancer and rapper to boot. We also love just how sweet, patient, and kind he is. Eddie’s always down to spend time with his little cousins and teach them how to Mambo, play Für Elise on the piano, or make puppets out of hole-filled socks for the community center’s fundraiser for new Bomba drums. We hope our audience loves Eddie just as much as Alma does and will look upon him fondly as their own “primo-amigo” on PBS KIDS. I loved interviewing Olubunmi Mia Olufemi about Eddie’s appearance on “Alma’s Way.” Dr. Mary Louise Russell, the pediatric rehab physician who was a consult on the show, also had great things to share about disability representation on television: What is your hope for the future of representation on TV and society’s view of disability? DR. MARY LOUISE RUSSELL: My hope for future representation for people with disabilities, both on TV and in society, is that people with disabilities will be portrayed as capable of fulfilling any relationship role: spouse, parent, sibling, friend, hero, or employee, or boss, or employee.  We still need to break down accessibility barriers so that people with disabilities can participate fully in these roles — both on television and in real life. As a person with a disability, seeing Eddie on TV gives me hope for the future. I am beyond excited for kids to see Eddie portrayed the same as every other character — as a person who just happens to have cerebral palsy.

Larissa Martin

Treat Me as an Adult With Cerebral Palsy, Not the Child I Used to Be

I am a person with a disability (I have cerebral palsy, am an amputee, a wheelchair user and I also have an intellectual disability). I am 32 years old and have accomplished many things in my life, personally and career-wise. Whether it be the philanthropic work I have done throughout my life or changing careers in my late 20s to become a writer, one thing has always remained true — my mom has always been very overprotective of me. I get that honestly, I do. A parent will always see their children as their babies, no matter how old they are, disabled or not. I have faced infantilization for years by my mom and other family members because of my disabilities. First off, what does this mean? Infantilization is when an adult is being treated like a child, even though nothing about their mental, physical, social, or intellectual wellbeing requires such treatment. Oftentimes, parents are guilty of this to some degree as their children are growing up, particularly when they are teenagers and trying to forge their path. For me, this includes having things done when I didn’t ask for them myself. Let’s say I have a plate of food and I am struggling to put it in a pile. I will be working on doing that myself and even though my mom knows I am very capable of doing it, she will just take the spoon or fork out of my hand and do it anyway. My mom also wants me to do things that she thinks I want rather than actually asking me or giving me other options. I feel that some of my family don’t want to see my growth. Recently, I was on the phone with my uncle who was telling me I need change, how good it can be, and how I need it to grow. If my uncle got a chance to really know me now and see how much I have grown, maybe he would better understand me. He said I was just comfortable where I was, which is true, but he tried to convince me that my mom and I should move closer to him in light of a recent tragic loss for my family. I get his concern and I heard him out but when I tried to voice my opinion, he kept repeating what he had said earlier. I ended up just “yessing” him. I didn’t know what else to do at the time. I just wanted our phone conversation to be over. I felt so invalidated at that moment. I feel like no matter what I accomplish or no matter how independent I try to become, for certain members of my family and in society, I will forever be a child instead of a grown woman who has her wants and needs. I won’t be seen as someone who has grown so much from the 26-week-old baby fighting for her life. When people chose not to see that as a problem that they need to address, not me, I used to feel the need to people please. I felt like I had to do things to make others happy, and I have done that for far too long. It’s time I do things that make me happy. I feel like oftentimes parents, caregivers, family members, etc. of those with disabilities see those people they love not as grown people with their own lives and needs, etc. but as they wish to see them — as children. It’s easier for them to baby them and still feel wanted and needed than encourage them to be independent. I feel like I am not the only one that can relate to this. I wish families of those with disabilities and society would see us as we are, capable of so much. We deserve so much better — to see us as we are, not as you wish for us to be.

Larissa Martin

Having a Friend With a Disability Is Not Newsworthy

I am a disabled adult and I am bothered by the news stories that highlight when a typical child does something for someone with a disability. This should not be something spotlighted or celebrated in the media because it is something any good person should do. The fact that this happens so frequently and how happy it makes people makes me sad because it should be done automatically. We should all treat one another with respect. When I went to junior prom, I was excited to share the experience with an upperclassman, but I wasn’t surrounded by cameras. It wasn’t a nice gesture because I was disabled. It was just an upperclassman and friend escorting me to my prom and that was enough for me. It was a night I will remember forever, but it wasn’t newsworthy. I founded and run a group in my community. It is co-led by two of my “typical” friends from high school and they volunteer with me to help change our community — that’s it, plain and simple. It’s not because they are doing something monumental to help their friend with cerebral palsy. We need to stop making these stories such a big deal when in reality they are not. I understand we need feel-good stories right now in our world, but stories like these aren’t news. They are just kids who were taught right by their parents and know how to treat people with respect. Ask yourself this: if it were two able-bodied kids helping each other, would it be getting tons of news coverage? I don’t believe so. As a society we need to raise our standards of what we deem news and not turn friendships into an act of heroism.

Larissa Martin

Learning to Use Less Ableist Language as a Disabled Person

What is ableist language anyway? Ableist language is that which devalues individuals with disabilities. Though people who use ableist language normally do not have ill intent, the use of their words presents as if individuals with disabilities are abnormal. Many times, offensive words are used so casually that their impact may not be directly seen. Many may not even realize these words can be associated with those who have disabilities. Some examples would be “retarded,” “crazy,” “wheelchair-bound,” “suffering,” and many others. As a person with a disability (I have cerebral palsy and am an amputee, a wheelchair user, and I have an intellectual disability), one would think I would know how offensive this is. However, I never knew the damage words like this could cause to my community. Growing up, I never considered the true meaning of these words. I heard them used and incorporated them into my everyday language, unaware of their impact, until a few years ago. Do I blame my parents and others who were around me for not telling me how harmful these words could be? No, because the reality is, they may not have realized themselves. However, I can change how I use this language in the future as well as how those around me use it. I wrote my first book called “Dear Anxiety: Letters from a Girl Who Cares and Letters from People Who Suffer from Anxiety.” Suffer was a poor choice. Suffer implies that anxiety is something those featured in my book are plagued with and can’t have functional lives with. The reality is people with anxiety have functional lives and can carry on just as anyone can. This word choice was made early on in my writing career. I have also referred to myself as wheelchair-bound in the past. When I say wheelchair-bound, it implies that it holds me back from doing certain things. Instead, the opposite is true, my wheelchair allows me to do certain things my otherwise limited mobility may hold me back from doing. I find it important to call myself out for using words like these because I am now aware of the damage they can do. I actively do not use those terms anymore and am making a more conscious effort around the language I use. I have changed my views on these words which have helped me to incorporate my knowledge into my everyday word choices. Though sometimes I may slip and use a word I shouldn’t (I’m human and make mistakes), at 32 years old, I am still growing and evolving. I feel the same standards need to be held up for everyone with regard to word choices. I know some things may take time once a habit is created, especially if it’s something we may not be aware is damaging, it takes time to break. I think we can all learn and work together at calling ourselves out and becoming more aware of the impact of our words. I think it is humbling when we all can take a look at ourselves and admit when we were wrong even if we didn’t realize it at the time. Progress can be made by starting a conversation. I believe society as a whole has to start making a more conscious effort towards not using some of the words I have mentioned. We need to continue to include other changes in our vocabulary and the way we see other people. Remember words matter and all individuals matter.

Larissa Martin

People With Disabilities Have the Right to Set Boundaries

Setting boundaries is a right everyone deserves, and that includes people with disabilities. Boundaries can be defined as the limits we set as acceptable and unacceptable. This can be behavior, language, and other things that can make a person comfortable or uncomfortable. When someone sets a boundary, it is not our business how or why they have set it, but it is our responsibility to respect it. I am a person with a disability. I have cerebral palsy as well as being an amputee, and I am a wheelchair user. I also have an intellectual disability. Though I am an adult, I still live at home right now. I need a lot of help with transfers, bathing, food prep, etc. When I was younger, I did not know the word boundary, let alone what a boundary was or how to set one for myself. It wasn’t until my early 20s that I found out about boundaries. I learned there were certain things I could “set” to ensure that I was comfortable in situations. I learned it was respectful of others to understand and be mindful of whatever boundaries I set for myself. Some boundaries I have set include not pushing my wheelchair without asking and respecting my privacy if I’m requesting it. An example of this would be my mom coming into my room recently when the door is closed without knocking and saying, “Look, I didn’t even knock.” I feel when someone is helping an individual with a disability, there are times when boundaries are ignored or pushed aside. Boundaries set by individuals who have disabilities are often treated as “cute” or as something to invalidate their independence. People with disabilities need to be taken just as seriously as everyone else. My whole life, I have been a people pleaser. This is something I am trying to change, but it’s a work in progress. Having a disability along with people-pleasing tendencies has made it easier for people around me to dismiss my boundaries. I feel like our boundaries are often not respected or seen as a real thing. When our boundaries are not respected, it makes us feel like we are less than, inspiration porn and not considered contributing members of society within our communities — which we very much are. We want to feel as if our own beliefs and what we stand for are being heard and validated. Though a boundary may seem minor or unimportant to someone else, if an individual has set one for their comfort, we need to honor and respect that. Those without disabilities may have a hard time understanding the importance of these boundaries, but I am sure everyone can empathize with a time where they felt they were not being heard and or respected and how dismissive that felt. If roles were reversed for a day and those who do not have a disability saw how those that do have them are treated regularly, it could create change. Boundaries matter everywhere. In our homes, in our communities, in our workplace and when interacting with other individuals, think about what’s important to them. Ask them if something is OK before doing it. Be considerate of everyone’s boundaries — and that includes people with disabilities.

Larissa Martin

Please Don't Say This to Your Disabled Loved One's Friends

I am a person with a disability. I have cerebral palsy, am an amputee, and a wheelchair user. In my life, I have had consistency issues — not with creating friendships, but keeping them. Growing up, I would always get close to someone, and we would be friends for a few years but more often than not, our friendships would end without explanation. This happened a lot in high school minus a few exceptions. As an adult now, I am lucky enough to have what I call my “core four.” These are my best friends I have had for some time. Still to this day, after we’ve done something fun together, I find myself repeatedly thanking my friends for spending the time with me or for the fun we had. I used to say it a lot more often than I do now, but I still do it more than average. I have noticed that my mom will always thank my friends for coming over or spending time with me. She does this every time, whether it’s simply a day trip or a weekend away. I can understand why she does it; seeing me constantly have plans I made with friends fall through over the years was difficult, I’m sure. However, it puts my friends in an awkward situation. In their eyes, they are just doing what any friend would do, not something that warrants excessive gratitude. I believe I am good at expressing my appreciation already and they understand how much their friendship means to me. Another reason this bothers me so much is that I can tell my mom only does this specifically with my friends. She does not thank the friends of my siblings who are not disabled. She seems to think they feel bad for me, when in reality I know they are hanging out with me because of the person I am, not because I am disabled. Both disabled and able-bodied people have friendships. I believe parents, caretakers, and society as a whole need to stop glorifying these friendships and treat them just like any other friendship — because that is what they are. I think when we change our perspective and consider how much unnecessary attention we are putting on these kinds of friendships, we can change our outlook for the better. Friendships are friendships and no matter how they come to be or who they’re between, they all deserve the same respect. If you are an able-bodied person, how would it make you feel if your parents thanked your friends for spending time with you?

Larissa Martin

Please Remember: You Could Become Disabled, Too

Did you know you have a 31%-54% chance of becoming disabled between the ages of 30 and 50? I was born with a disability. I have cerebral palsy, and I am an amputee and a wheelchair user. I have always been disabled; it’s my life and will be my life forever. It’s all I have ever known so it’s nothing new or shocking or even inspiring. It is my every day. I think what people fail to realize about themselves and disability as a whole is that anyone at any age can become disabled. It can be a physical disability where you’re left becoming a wheelchair user or using other forms of mobility equipment. It can even be an invisible disability like chronic pain, anxiety or PTSD. The perfect example I can give is my mom. She went back to work for six weeks in 2005, got hurt and has been disabled ever since. Just like that, her life changed forever. I think what bothers me most about society and its lack of understanding of disability is the fact that a lot of able-bodied people can never see themselves as having some type of disability, even though it could be a possibility in the near future. I think if more people came to that realization, we could start to have an honest and real conversation about what it’s like for those of us within the disability community. We could discuss important issues like the lack of accessible jobs, apartments, etc. If able-bodied people recognized the struggles of those with disabilities could one day affect them, maybe we would see some necessary changes. I am not saying I wish for people to become disabled. I am just saying more people need to be willing to adapt their mindset from “I couldn’t imagine if this happened to me. I don’t know what I would do” to “This could be me or someone I know one day. How can we make things better and more accessible now to make things easier in the long run for future generations of disabled individuals?” It’s important to remember that able-bodied individuals may have never had to advocate for certain things to make their daily lives easier. My advice to those people who believe this could never happen to you: listen, learn, educate yourselves, and please don’t assume that disability will not happen to you. The reality is it can. The question is, are you ready for a world that isn’t made for people like me? If not, how are you going to fix it? Having a disability can affect even you or those you know and love.

Larissa Martin

Learning to Be a Self-Advocate as a Person With a Disability

I am a person with a disability. I have cerebral palsy, and I’m an amputee and a wheelchair user. I am 32 years old and still live at home with my family. My mom was a single mom for nine years, taking care of three kids at the time. She had to become a fierce advocate for me all through my childhood, teen years and young adulthood. It wasn’t until a couple of years ago that I started advocating for myself, doing what she would such as making my doctors’ appointments and telling my aides what I need when I need it. As I have grown into adulthood, I have had multiple different careers. I started a small group in my area and ran it for 10 years, and then while doing that, I found out I had a passion for writing and now write full time. I believe my mom is a caregiver at heart and loves to feel needed; that’s her love language. When I started doing and accomplishing these things on my own, she didn’t like it because I no longer needed her and I wasn’t doing things the way she would. I believe many parents and caregivers feel this way, especially parents of adults with disabilities, because they’re so used to doing everything for their child. That’s your job as a parent, right? But as your kids grow into adults and start to do things for themselves that you typically would do and they don’t advocate the way you would, you may not know how to react or know whether you should step in or not. If your teen or adult with a disability, visible or invisible, shows excitement to start advocating for themselves, give them that freedom. Trust them and be willing to let go. It may not be how you would advocate for them, but they are finding their own voice about their disability and nothing is more powerful than that discovery of advocating for themselves. Parents/caregivers, we are capable of doing things for ourselves and that is something you can be proud of — you have raised a very independent adult who has a voice and can make a difference within the disability community and in society as a whole. Parents/caregivers, you will always be needed in your child’s life, no matter how old they are. Even though your role as their advocate might change and you may not like it at first, you will be amazed what your child is capable of — all because you taught them how to be the advocate they are today and stand up for themselves.

Larissa Martin

It's OK to Let Your Child With Cerebral Palsy Struggle Sometimes

I am a person with a disability. I have cerebral palsy and am an amputee as well as a wheelchair user. My mom is very over-protective of her four kids, especially me, her daughter with a disability. My dad is not so over-protective, and for that, I’m grateful and appreciative. I still currently live at home. Recently, there was an instance where my brother needed to help me with my phone. I needed him to make adjustments to my phone case so I could access my stylus independently. My brother handed my phone back and asked me to try to do what I needed after he showed me how. At first, I struggled with it. Immediately my mom began to see me struggle and asked my brother if he thought I needed a new, easier case to manage my phone. I responded with “no, all I need is to practice as I learn what I need to do.” I learned easily and can now use my phone on my own. If my dad sees me struggling with something, he will normally try not to intervene unless I ask for help. I appreciate so much that he lets me do and try things on my own. Part of the reason I think my mom is so over-protective is she still views me as her little baby. I think this is normal for most parents. Even though parents want their children to grow up and thrive, often part of them never wants their children to not need them. This still happens no matter what we achieve and accomplish in our lives. I think, especially when it comes to children with disabilities, some parents will do anything to avoid seeing us struggle. It is hard emotionally for a parent to watch their child, disabled or not, have a hard time doing something. However, I think when parents consistently jump in and help, they can unknowingly cause a codependence issue for their child or adult with a disability. Trying to figure out things on our own allows us to develop a sense of independence as well as an ability to think for ourselves without having parents step in constantly. Especially when it’s not necessary. Children, especially those with disabilities, want to prove to our parents what we are capable of doing. I believe deep down, parents believe their kids are capable of doing things by themselves, but parents know they won’t be here forever so they want to do it while they can. Instead, they should let their child or adult with a disability struggle and prove to their parents that they got this. It may not be perfect because nothing is, but if they can do it, then that is another skill they have in their “independence toolbelt.” I know it’s hard, but it’s necessary for both parent and child, no matter how old they might be. I have struggled many times and will continue to struggle many more times in my life. Without the struggles, I would not be where I am today. There are valuable lessons to be learned when we struggle. It’s OK to let your child learn from struggling. I am not saying parents need to completely stop helping their children. I am saying if you know your child or adult with a disability wants to try something on their own and you think they are capable of it, let them try. It’ll be OK in the end!

Larissa Martin

When I'm Pressured to Go on a Diet as a Person With Cerebral Palsy

I am physically disabled. I have cerebral palsy and am an amputee. I am a wheelchair user, and I cannot transfer so I have to rely on aides, family and sometimes friends to lift me. I have been a foodie for as long as I can remember. I always know when my parents want to talk to me about my weight. I call it “the talk.” It always starts the same way. They say, “We noticed you’re eating a lot of junk lately.”  It most often ends with me agreeing to go on a diet. Not because I want to, but just to save myself from having everything I eat or drink monitored and judged. The two major times I dieted, I hated it. In 2007, after I graduated high school, I managed to lose 19 pounds and in 2016, I followed the same plan, just a revamped version, and gained weight! I honestly understand why my parents encouraged healthier eating patterns. They had good intentions and were concerned. But, in the end, it really hurt and gave me a bad relationship with food that honestly, I still have to this day. I will give a couple of examples: When I go out to eat sometimes with my friends and I order something that is not the healthiest, I can hear my parents’ voices saying, “You don’t need that.” Someone will be making my plate of food and I will hear one of my parents say, “She doesn’t need that much” or “You don’t need to finish it all.” But in all honesty, I might want to finish it all and that is OK. My whole relationship with food is a work in progress, but it has gotten so much better because I know my worth now and that there is absolutely nothing wrong with me. I have one best friend who has seen my struggle and sees my growth with accepting my body and my relationship with food. Their support has helped me in ways I can’t express. This  friend is proud of me, and more importantly, I am proud of myself and the progress I have made over the years. My big question to caregivers and parents is “Why?” I understand wanting to make sure their loved ones are making healthy choices. If health is a concern and/or there is a valid medical reason for pushing healthy choices, that is one thing. However, if you are pushing your loved one to lose weight or make any life choices to make things easier for you and other caregivers and not considering their opinions or feelings, you might want to reconsider your approach. I want anyone that has a person with a disability in your life that you take care of to consider what will happen when your loved one moves on from your care. Will you still try to control their choices, or will you choose to be nitpicking their choices from afar? There must be a fair amount of trust put in your loved ones and they need to be given some freedom to make choices for themselves, even the occasional unhealthy choice. Caregivers, parents, you are not bad people for wanting the best for your loved one with a disability regarding their food choices. However, I want you to understand that when someone is disabled, so many things are out of their control. If food is one thing they have a say over, they deserve it! Everyone’s weight fluctuates, able-bodied people and people with disabilities. If your loved one chooses to go on a diet on their own or per the recommendation of a medical professional, that is one thing. In my opinion, what is not OK is controlling an individual’s diet to fit a caregivers’ needs and not their needs. I want caretakers to think of how you would feel if the roles were reversed and you were told to alter your food choices strictly based on the convenience of others. Sometimes we just need to take a long hard look at ourselves and come from a place of compassion.