The Abler's Review On The Memoir Of Such a Pretty Girl By Nadina LaSpina A story about struggle, empowerment, and disability pride

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The Book Review

“Such a pretty girl: A story of struggle, empowerment, and disability pride” by Nadina La Spina

Publishing Company: New Village Press

Publicist: Lorna Gargano

This is the real-life story of a little’s girl journey that starts with one goal in mind: being “cured” of her polio, to later finding acceptance with herself as a woman who has a disability and eventually finding her passion for disability rights and activism. “Such a pretty girl,” is the story of a young Sicilian girl-turned activist by the name of Nadina La Spina who dealt with always hearing pity and being told by many to send her suffering to the Lord. She was often told that because she was disabled she could never live a full life or, “Che Peccato” (what a shame). That was what she heard growing up in Sicily where they believed a woman’s destiny was to get married and have children. After unsuccessfully seeing most of the doctors in Scilly in 1960 her father went to America to get things settled for Nadia and her mother to be able to join him the following year when she was thirteen. Leaving their home in a little town called Riposto in Sicily and never looking back only forward to the best hospital in America where her father proclaimed she would soon be walking, and completely “cured” of her polio. 

Arriving at what her father called “The best hospital in America”, HHS was where her long journey of being cured of her polio began. This would also be the place where she would finally feel like she isn’t the only disabled child in the world and becomes friends with children from MDA, children with CP, and many other disabilities. In this book, you will be taken on a journey of life, friendship, true love, and a passion for fighting for the underdog. You will read about the great friendship of Nadina and Audrey, a girl from Long-Island New York with Sina Bifida, her “blood sister” and how that friendship was cut far too short by Audrey taking her own life. The experiences she had going in and out of the hospitals, the countless surgeries, and physical therapy, as well as the sexual assault that resulted in her virginity being taken. Later as an adult coming to the personal decision to have both her legs amputated and fitted for prostheses. This was a choice made by Mrs. La Spina so that she would have the ability to walk better than she had before. She also tells of her experience with what is called, post-polio symptoms, in which your body can handle so much from a physical standpoint that chronic pain and exhaustion can become a permanent fixture for not just people with polio, but also for others with other physical disabilities. 

In this book, you will also be introduced and hear about many ground-breaking and history-making moments that had occurred such as the ADA, as well as “meet” some influential figures in the activist arena like Ed Roberts, the man who founded and launched Independent Living Centers all across the states, or Judy Heumann who also has polio and not only worked with Ed Roberts but also won a case against the New York City Board Of Education to fight and get her teacher’s license after being denied because of her disability. That case made national news in the year 1970. You’ll cheer when you read about how she matter of factly told an officer, “Yes, officer I want to be arrested”, during a sit-in in Washington DC with a group from ADAPT-(A community of disability activists that organizes and participates in non-violent demonstrations which include disobedience) where they were all refusing to leave the lobby. 

This led to several arrests over the years-fighting for our equal share in a society driven by greed and money. The events in DC implored her to continue her passionate fight for equal rights for herself and her many brothers and sisters within the disability community. In the late 90’s she had the opportunity to teach disability studies at the new school and by the early two-thousands, she was completely immersed in the disability arena, teaching disability studies through online classes. There are many themes throughout this book that are not only thought-provoking but also touching. Mrs. La Spina eloquently talks about losing both her parents to cancer. Mrs. La Spina shares the moment about when her father decided to stop his treatment, and she tells her father not to leave her and he tells her how proud he is of her. Her father died at home on June 20th, 1996, and she shares the moment she and her mom had when they cooked her favorite meal together on her birthday, her following, and her passion on July 23rd, 1997, also at home.

 Another moment that touched me was when she concluded settling in her life just because she has a disability and that included her love life I love reading about the love story between her and her late husband Danny. Ignoring society’s harsh judgments and loving one another just because they were simply two people who loved one another very much and would eventually legally marry on July 26, 2013.

What I found the most eye-opening myself were the number of disability activists, organizations, and groups there are around the country all connecting, coming together and presenting a unified front for the right to be access to our civil rights, and not have them being called as a privileged for wanting the right to access the things we need to live our lives like everyone else. Mrs. LaSpina opens our eyes to the hard truth and challenges that our very diverse and vast community faces daily. We all have the same desires, goals, dreams, and hopes that we all have because we’re all human regardless if the person has a disability or not. The need to fit in; the need for acceptance. 

The desire to please our families, finding love, and love who want simply because we love them. And not because the person we may love has the physical ability to help us. This book holds a beautiful message; a message to society that they need to pay attention to us. That we are here, and we will not be going away. We have overcome, but we have more miles to cover. I urge everyone especially those in connection with influential people that can work with and or in connection with the disability community to help expand upon on all the accomplishments, and groundbreaking moments-and ask themselves, “Do I want to be part of the problem or do I want to be part of the solution?” 

Thank you Mrs. La Spina for sharing your story with us, and here is to continue to moving forward and achieving equal rights for everyone. 

The Interview With The Author Of Such a Pretty Girl, Nadina LaSpina 

1.) I believe we need to change the narrative/tone when we use language that could be considered ableism rather than blaming the word or words itself. Do you agree or disagree?

Language is important, and it is important to use words that are accepted and preferred by a marginalized group. In my book, I change disability words according to the times I’m writing about. As a little girl in Sicily I’m called “ciunca,” cripple. In the US as a teenager, you find the word in use at the time—"handicapped.” Now, I call myself a “disabled woman.” I prefer it to awkward “woman with a disability.” In my circles, we see our disability as an integral part of who we are and even something we’re proud of. So we’re not big on so called “people first language.” However, if I’m speaking at an event where there are people with different types of disabilities, or politicians, I may use “people with disabilities” rather than “disabled people.” I know people first language is important in the community of those with intellectual disabilities, so I’ll respect their preference. And I will not say “disabled” if referring to “Deaf” persons, who use “Deaf” with a capital “D” (to express pride in their language and culture). I do not like euphemisms, such as “physically challenged.” Euphemisms are used when the actual word is seen as “not nice,” as “bad.” There is nothing bad about the word “disabled.” When I write creatively, about myself, at times, I’ll take liberties. For example, I like to use “cripple” for its shock value, and, in the disclaimer to my book, I apologize to those offended by my use of the word.

I think what you’re saying is that “ableism” goes way beyond using correct language. I am in total agreement with you about that. People like quick and easy solutions. They may attend a disability awareness workshop to learn the “right” words, and get a little advice on how to act around us—like bend down to talk to a wheelchair user and don’t grab a blind person and pull them across the street—and they think they’ve learned how not to be ableist. Ableism is so ingrained in the fabric of our society it is not so easy to free yourself from it. Using correct language isn’t even scratching the surface. I don’t get angry if someone refers to me using the “wrong” word (though I may correct them), but I do get angry when someone invites me to an event they’ve organized in a place that’s not wheelchair accessible, and makes matters worse by saying “but we’re happy to carry people with disabilities up the stairs.”

2.) Aside from your current work, what further actions would you consider taking to help protect the well-being of the various disability communities from further physical danger?

There is so much that needs to be done, that no matter what I do, I always feel it is never enough. I wish I could get everyone who’s in an institution against their will back to their own home with all the services they need. I wish I could stop the neglect and abuse, the lack of needed and wanted treatment, as well as the forcing of unwanted treatment. I wish there was affordable integrated accessible housing for everyone. I wish our young people would all get the adequate education they deserve, and the type of employment they are qualified for, without discrimination. I wish health care was a right in this country, and those who need long term services and supports didn’t have to be poor to be eligible for Medicaid. I wish those whose disabilities are not visible wouldn’t be thought of as fakes, even within our own movement. I could go on and on and on. 

I will continue to fight all those battles. But since my energy is limited, and the time I have left on this earth is also limited, I’d like to focus on a few things. 1. Get the different segments of the large disability community to be more unified, to understand and respect each other’s needs, to make sure we never work against each other. 2. Get young people to understand how fragile the rights we’ve worked so hard for are. I am thrilled to see many doing great work in disability arts, and in gaining disability representation in the media. But let’s not forget that we can lose basic rights that we fought hard to gain. We must make sure that doesn’t happen. The struggle must go on. 3. Unite and work with other groups fighting oppression, not only because disability intersects with all other groups, but because I believe we are all in the same struggle. 

3.) What message/advice would you give to fellow advocates like myself, that you wished you followed in the beginning?

In the beginning, when I succeeded in accomplishing something, like getting a ramp built, I felt so empowered I thought, wow, this is all I have to do. Then, I would fight for some other changes, and nothing at all happened. I would get upset and think, we’re not getting anywhere—what’s the use? So, my first advice is: Be ready for those ups and downs, don’t expect a smooth road ahead. Don’t get discouraged. Progress is very slow. Persevere.

In the beginning, I wasted a lot of time being conflicted. I wanted to be with disabled people, because with them I felt I belonged, and it was necessary (and it also felt good) to fight for our rights. At the same time I wanted to be with non-disabled friends and colleagues (I was teaching Italian at the time); but in order to be accepted I felt I had to act as non-disabled as possible around them, not emphasize my disability; I even avoided talking about the work I did for disability rights, because non-disabled friends didn’t take it seriously, and when I let myself get angry, they started avoiding me. Sometimes, I felt like I was two different persons. So, my advice is: always be yourself—your beautiful proud disabled self. Don’t let anyone make you feel that you have to make compromises in order to be accepted. Don’t be afraid of showing anger, even if by doing so, you risk not being liked.

A final thing: Advocacy / activism is work, it’s real work, it’s hard work. Even if we’re not getting paid for it. Especially when we’re not getting paid. In the past I thought of teaching as my real work. But I was really working twice as hard being an activist. So, remember, you are working, and working hard, don’t let anyone even imply you aren’t. And because you are working hard, you will need to rest and relax from time to time, and have some fun—you deserve it. Besides, because many still insist on thinking of our lives as sad and pitiful (an idea that if internalized can be psychologically extremely harmful), having fun is itself a revolutionary act. You’re being an activist by proving them wrong. 

4.) What do you think Audrey would say about all the events, and accomplishments you have witnessed or taken part in since her passing?

I often ask myself that question. I have always thought that, if she had lived a little longer and found the disability movement, which was at the time just getting started, if she had met other disabled people who were fighting back against the prejudice, discrimination, pity (we didn’t have the word ableism back then), she would not have committed suicide. She might have joined the others, like I did, and become an activist. Of course, I cannot be sure. I can only hope she would be happy with my choice to dedicate my life to the movement and proud of all that we have been able to accomplish.

5.) What would you say to someone who thinks that our advocacy work is a waste of time or sees it as whining and complaining?

To those who say advocacy is a waste of time, I would show all that has been accomplished by the disability movement in the past 50 years—the laws we’ve managed to get passed, the changes made in the environment and in society. I would also compare our movement to other movements of the past. We’re women wasting their time when they fought for the right to vote? I would say we are not whining, but we are complaining very loud and we are ready to do our complaining in court. Those who are not complying with the law and are not providing the accommodations we require are the ones whining, saying they can’t afford to put in a ramp or hire an ASL interpreter, when they have plenty of money.

6.) What are some of the important lessons you have learned about yourself while writing this book? Have you considered writing a how-to guide on how to advocate for yourself within society?

I learned that I am pretty damn strong. I never stopped to think about all the battles I’ve had to fight until I wrote this memoir. At the same time, I learned about my weaknesses, my vulnerabilities. I never knew how much emotional pain I was carrying around inside of me. I thought I was over it. But there were times, when I had to stop writing because it got too painful. 

I’m sure there are guides already about being an advocate and an activist. There are certainly good guides on the use of civil disobedience. I’m not sure how much advocacy and activism you’re planning to do. Please, feel free to ask my advice anytime you need it.

7.) How would you describe society’s “handling” of the disability community—back then versus now?

Do you mean is our society more accepting of disability, more inclusive of disabled people? Generally, yes. Back then, when I was a girl, I never would have thought that a girl using a wheelchair would be in a Broadway show, much less win a Tony (like Ali Stroker). Because we fought to get laws passed (the most well-known is the ADA), we have been reaping the fruits of our labor and seen much improvement, especially as it relates to access. But still, sadly, so many of our people end up in institutions, so many are still unemployed, they’re poor. Non-disabled people still stop us on the street to say the most ableist things… I guess you could say, we’ve come a long way, but we still have a long way to go.

8.) At thirteen you came to the U.S. with your family, primarily so that you could be treated by American doctors. Your father was convinced that they would cure you. Throughout your book, you talk about how problematic the focus on a cure is, but your father loved you, and his quest for a cure was an expression of that. How did you navigate that emotionally? Why do you think the focus on curing is misguided?

Yes, for my father, wanting me to be cured was an expression of his great love for me. But what I heard was that I wasn’t good the way I was, I needed to be fixed, in order to have a good life. I felt I wasn’t the daughter my father wanted me to be, that I had to be cured to make my father happy. When we came to the US, in various hospitals I was tortured. I realized early on I wasn’t going to be cured. I accepted that. What hurt was feeling that I disappointed my father, failed him. Eventually, I understood my father, I knew how much he loved me, so I was able to let go of those feelings of failure.

Focusing on cure gives false hope, when it is obvious that a certain condition is permanent. It encourages people to put their lives on hold and wait for something that’s not about to come. I’ve seen people who have become disabled later in life, for example, get stuck in that “waiting to be cured” limbo. We all need to live our lives now, we need services and supports, access, equal opportunities, now. Internalizing the commonly held opinion that, unless cure is possible, life will be sad and pitiful (as I said before) can be extremely damaging. 

I am certainly not against research to treat and cure diseases. As a disability activist, however, I want to make sure tax payers’ dollars don’t only go to medical research, but go to make the world more hospitable and welcoming to those of us who aren’t going to be cured.

9.) Along with being a disability rights activist, you are also a feminist. How do oppressive and patriarchal norms uniquely affect disabled women and can you give some examples from your life that show this impact?

In Sicily I grew up believing the life purpose of a woman was to be a wife and mother, and that was still the common consent in the US in the early 60s. I also grew up believing that wasn’t to be my future, because no man would ever want a disabled wife. Though at first very upsetting, there was also something somewhat liberating in not having marriage and motherhood forced down my throat. So, in the late 60s I embraced feminism (second wave), which taught us that being a wife and a mother didn’t have to be a woman’s only choice. Some women were making the uncharacteristic choice of pursuing a career rather than having a family. But though I studied and graduated from college, because of my disability no one wanted to hire me. For a while there didn’t seem to be any future for me (until I went to graduate school and started teaching). Feminists also fought against being regarded as sexual objects. But disabled women were at the same time fighting against being considered “asexual.” I remember when, back in 1986, a young disabled woman (named Ellen Stohl) posed for Playboy Magazine. As a feminist I was very disturbed by the objectification, but as a disabled woman I understood her need to flaunt her sexuality.  

So, while at times those two identities—feminist and disability rights activist—reinforced each other, at other times they did not intersect in ways that were exactly harmonious. I think we’ll be coming back to that subject as I answer your other questions.   

10.) You spoke at The Women’s March in New York City and revealed that you had been sexually assaulted in the hospital. You also discuss this in the book. It seems we rarely hear accounts of disabled women being targeted in this way. Why is that and what do you think needs to happen for this issue to become better known?

We don’t hear about disabled women being sexually assaulted, because they are less likely to report it. Many have intellectual disabilities, which may make it harder for them to speak out. But most of us—whatever the disability—have been conditioned to think of our bodies as defective, and have been made to feel we should be grateful for any sexual attention we may get. Some of us, also, may have become so accustomed to our bodies being handled, being probed, being operated on… At times, it may even feel as if our bodies don’t belong to us, but are common property. That’s how I felt, when I was molested and assaulted repeatedly in the hospital. I didn’t even recognize it as abuse.

Sometimes when abuse is reported, usually not to the police but to a friend or family member, the disabled woman may not be believed. That’s because of the ableist view of us as asexual—a view that’s still with us, many years after the young woman I mentioned in my previous answer posed for Playboy. 

We need to reclaim our bodies, learn to value them, learn to protect ourselves as much as we can, learn to recognize the abuse, and speak out loud, accuse the predators. Today, because of the #MeToo movement, women are being believed instead of being blamed for what happened to them.

We have to be careful about something else, though—and here we break away from the common feminist perspective. There are cases when the disabled woman (or person, it doesn’t necessarily have to be a woman) was willing and happy to have sex but was seen as unable to give consent because of the disability. This can happen most often if someone is under guardianship. So, we also need to make sure that our choices are clear, and that our wishes are respected.

11.) In Such a Pretty Girl you write about coming to not only accept your body but see it as beautiful. In a society awash in ableist beauty standards this was a difficult task. How did you change your perception of your body?

Very slowly.

When I was in the hospital with Audrey, we would only look at our bodies in the bathroom mirror from the waist up, our legs covered by a sheet. We were happy when our legs were hidden by casts. We looked at the models in Seventeen magazine and cried, knowing there was no way we could ever be like them. For many years after that, I looked at myself in the mirror only from the waist up.

It was getting to know other disabled women that started the change in me. It was very gradual. I noticed some didn’t mind the way their bodies were different than non-disabled women’s bodies. A little at a time, I stopped comparing myself to models in magazines and started looking at my “disabled sisters,” and liked their different bodies, and liked seeing the similarities in the way my body and their bodies were different. I started noticing other disabled women’s beauty before I could see my own. I was 45 — and in love with my husband, Danny — when I finally looked at my naked body in the mirror, and I was astonished to see how beautiful my body looked and felt to me.

The flourishing of disability culture — our artists depicting disabled bodies and performers flaunting their differences on stage — made me appreciate more and more the beauty of my own body. When teaching disability studies, I tried to get my students to see “the frailty of atrophied limbs as interesting as the frailty of a Giacometti sculpture, the curvature of scoliosis as fluid as a Matisse cutout, the classic timelessness of the Venus de Milo in a body with missing limbs…”

12.) What challenges do disabled women face when trying to experience sexuality on their terms and create a fulfilling and authentic intimate life?

I’ve touched on some of those challenges already when answering previous questions.

We’ve been seen as asexual, even as not “whole, real women,” and our bodies have been considered defective and lacking. Unfortunately, some of us have internalized those opinions. I have already a few times called internalized ableism extremely harmful. The harm it caused to my best friend Audrey was extreme—she committed suicide. Disabled women’s reactions to such hurtful attitudes will differ. Some women retreat, live lives that are not as sexually full and happy as they should be. Overprotective parents and other family members may contribute to that problem.

Other women may rebel in various ways—maybe in ways that aren’t in their best interests. They may go with anyone who will have them, even put up with abusive partners. In my book, I mention encounters with some men who fetishize disabled women. I don’t want to generalize; some may be nice (some disabled women are happily married to some of them). My negative experiences were with men who were looking for disabled women, because they believed us to be passive, easy to subdue and control; they wanted women who would let them feel “manly,” in the worst meaning of the word. Unfortunately, there are quite a few around still—who are not just attracted, as they say they are, by the disability per se, but who want to enjoy the advantage/privilege of having an able body. I write in my book that, if disability ever became a neutral characteristic like having big boobs, for example, a preference for disabled women would be natural and common, and the word in use now, “devotee,” would no longer make sense.

Another subject I approach in my book is the reluctance of choosing a partner who also has a disability. There is the ableist assumption that if both partners are disabled, it’s because neither could do better. “Better” meaning they couldn’t get the “prize,” the trophy,” the non-disabled partner. After various relationships with non-disabled men (one of them with a very good and sweet Italian man) I made the conscious decision to have a “disabled lover.” My husband and I put up with the ableist remarks of strangers, “Aren’t you cute, both in wheelchairs?” or “How do you manage? Can you have sex?”

We learned not to let such remarks bother us, but rather laughed at them. We knew those ableist people never even dreamed of a love as great and strong as the one we had. We considered ourselves the luckiest couple in the world. 

Another subject I mention in passing toward the end of the book (when my husband has lost so much function and I, too, because of age and post-polio, am not as agile anymore) is the need to be creative, find alternate ways of achieving pleasure. Luckily, most of us, because of our disabilities, are highly skilled when it comes to inventiveness and creativity—skills which can be used in all aspects of life, including sexuality.

In Chapter 24, as I wait while my husband is having surgery, I write (p. 308): “Our lovemaking, no matter what creative form our disabilities required it to take, was still heaven on earth. We relished now more than ever every precious moment of pleasure.’

About Author Nadina LaSpina 

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We here at The Abler, hope you enjoy the first ever book review! On the story Of Nadina LaSpina. Such a Pretty Girl tells the story about the many struggles the disability community face. I hope our followers within The Abler community pick up this book in hopes to continue to educate the masses on the power power of self-advocacy. I also hope that the reader comes away feeling empowered by their own abilities, beauty, and and their self-worth, and know just how powerful they are regardless of how the world may view them. Such a pretty girl a story of struggle, empowerment, and pride is a story that so many in the disability community can relate to. 

I strongly believe that this book by Mrs. LaSpina should be tool used in classrooms, lectures, and public forums to help the general public and society as a whole understand disability better. I’d like to personally thank Mrs. LaSpina for being so open and honest with her story, and for eloquently painting a mature of what it’s like to be a woman with a disability. 

Other information about the book and the author 

Publisher of the book. New Village Press

You can connect with Mrs. LaSpina:

NadinaLaspina.org  where you can also find her blog, Disability culture. 

Mrs. Laspina also has  written for a variety of articles online which include the following:

Able News 

Ragged Edge

You can also find a reading of her book with C-Span 2, Speaking Book TV Pen & brush gallery on youtube.(The original airdate for that was 7.31.19.)   

You can order the book via, Amazon.com by going to this link: https://www.amazon.com/Such-Pretty-Girl-Empowerment-Disability/dp/161332099X/ref=sr_1_1?crid=27EGZW9ULJW3P&keywords=nadina+laspina+such+a+pretty+girl&qid=1579044422&s=books&sprefix=Nadina+%2Caps%2C153&sr=1-1 

Such a Pretty Girl can also be found in all major distributions, wherever books are sold.