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The Me in the Mirror
Writer, activist and artist Connie Panzarino was born in 1947 with the rare disease Spinal Muscular Atrophy Type III, formerly called Amytonia Congenita. Throughout a childhood filled with both pain and joy, she strove to define "I knew I was different. Now I had a name for the difference, like being Italian or Jewish. I was an Amytonia. I didn't understand if that meant that I would never walk, or if all it meant was lack of muscle tone. I didn't know that most children with this disease die before they're five years old."
In this deeply moving and eloquent memoir, Connie Panzarino describes her decades of struggle and triumph, her relationships with family members and long-time lover Ron Kovic (author of Born on the Fourth of July ), her eventual turn to lesbianism, and her years of pioneering work in the disability rights movement.
Filled with spirit, passion and defiance, The Me In The Mirror tells the story of a remarkable life.
In this deeply moving and eloquent memoir, Connie Panzarino describes her decades of struggle and triumph, her relationships with family members and long-time lover Ron Kovic (author of Born on the Fourth of July ), her eventual turn to lesbianism, and her years of pioneering work in the disability rights movement.
Filled with spirit, passion and defiance, The Me In The Mirror tells the story of a remarkable life.
260 pages, Paperback
First published March 21, 1994
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Displaying 1 - 4 of 4 reviews
June 18, 2023
This was an incredible book.
Connie Panzarno was born with what is now known as Spinal Muscular Atrophy, or SMA. It caused her to have little to no control over her muscles or motor skills, and muscle wasting/deterioration with time. She was not able to walk, or to take care of her basic functions of living, like bathing and using the toilet. But her mind was brilliantly intact, as SMA does not affect the intellect.
Connie was born in 1947, when attitudes towards disability were abysmal. There were little to no disability rights. Children with disabilities didn't have a right to an education, and many were kept out of school. There was no respite for parents and little to no therapy. There was little to no understanding of disability. It horrified me to read of how Connie was disciplined harshly because she couldn't walk, the adults and professionals in her lives thinking she just wasn't trying hard enough.
Connie endured abuse at the hands of her parents, especially her mother. Her mother would regularly scream at her, refuse to toilet her, treat her as a burden and even tell her she hated her. When Connie's sister was also born with SMA after Connie's healthy brother, things got worse.
While there was no excuse whatsoever for Connie's mother's cruelty, I did feel for her. The day in, day out care of severely disabled children plus having to do all the household chores and care for an able-bodied son must have been crushing. She had no hope or relief., and like I said, little was understood about disabilities in the first place. Most disabled children were institutionalized in horrible places like Willowbrook, and the world at large would not learn of these horrific "snakepits" (as described by Bobby Kennedy) until Geraldo's expose of Willowbrook in the 70s. And Willowbrook was just one of these awful places.
So, Connie grows up in a world hostile to those with disabilities. She isn't even allowed a chair for mobility until she is much older, so had little to no freedom.
Despite her overwhelming obstacles, Connie manages to get a college education- a feat difficult to obtain for any working-class woman in her generation, let alone one with disabilities. Connie has to fight for basic accommodations at every turn. When she is working, she's told she's no longer considered disabled as she is a college grad and able to work, so is not eligible for attendant care, even though she needs help with all her personal care. She then offers to go on disability, and she's told she will be denied as she is able to work. She also has a lot of trouble getting a job in the first place and has to aggressively advocate to get hired. There were no laws protecting the disabled from discrimination then.
Connie also grapples with the trope and overwhelming idea at the time that disabled people are asexual. Like most people, she wants a relationship. She starts to date a former classmate she vaguely knew at school, Ron Kovic, after he comes into her office at the university to sign up for classes. Yes, "that" Ron Kovic, who penned "Born on the Fourth of July" about his Vietmam war experience that left him a disillusioned paraplegic with severe PTSD, something else not acknowledged at the time. Ron and Connie's relationship is turbulent, on and off again for years, complicated by his inability to be monogamous and his untreated PTSD that leaves him with flashbacks, emotional volatility, outbursts of anger and bitterness about his disabled state. He and Connie eventually break up, and Connie begins to affirm what she has felt throughout her life, that she identifies as a lesbian.
Now disabled and a lesbian in a world that understands neither, she again has to fight and advocate for everything. Connie manages to have her own apartment and even spring another disabled friend from the horrors of a filthy personal care home. Connie's relationship with her parents is strained when she comes out as gay. Being conservative Catholics, they don't understand it at all. It takes Connie a long time to forgive and mend things with her mother, but she eventually does, and it is really heartwarming to see and amazing that Connie could find that forgiveness within.
Connie becomes a successful advocate and artist, and for a while owns a home that is like a safe house for lesbian women and artists.
I was sad to read that Connie has since passed away. She was a trailblazer and one of the strong voices for the rights of the disabled. Her sister, Patricia, (who goes by her childhood nickname that Connie gave her, pidgie, because Connie thought she looked like a little pigeon when she was ready for breastfeeding )who also has SMA, is a successful singer-songwriter. Oddly, from what I've read, Pidgie's memories of her parents are far more positive. Maybe Pidgie chooses to or can't remember the bad times. She's a lot younger than Connie, so it's possible her parents greatly changed in that time period.
Being the mother of a daughter with an "invisible" disability (Autism and ADHD), it made me grateful for all the supports and awareness the disabled have today compared with when Connie growing up. Granted, we still have a long way to go, and I still have to advocate for my daughter's needs, but it's nothing like in the 50's, when I shudder to think that doctors might have told me to "warehouse" her, in spite of the fact she has an above average IQ and does well in a mainstream school.
It's thanks to people like Connie , Ron, and Pidgie that the disabled have the rights they have today..and there are still voices now speaking out for needed advocacy.
Connie Panzarno was born with what is now known as Spinal Muscular Atrophy, or SMA. It caused her to have little to no control over her muscles or motor skills, and muscle wasting/deterioration with time. She was not able to walk, or to take care of her basic functions of living, like bathing and using the toilet. But her mind was brilliantly intact, as SMA does not affect the intellect.
Connie was born in 1947, when attitudes towards disability were abysmal. There were little to no disability rights. Children with disabilities didn't have a right to an education, and many were kept out of school. There was no respite for parents and little to no therapy. There was little to no understanding of disability. It horrified me to read of how Connie was disciplined harshly because she couldn't walk, the adults and professionals in her lives thinking she just wasn't trying hard enough.
Connie endured abuse at the hands of her parents, especially her mother. Her mother would regularly scream at her, refuse to toilet her, treat her as a burden and even tell her she hated her. When Connie's sister was also born with SMA after Connie's healthy brother, things got worse.
While there was no excuse whatsoever for Connie's mother's cruelty, I did feel for her. The day in, day out care of severely disabled children plus having to do all the household chores and care for an able-bodied son must have been crushing. She had no hope or relief., and like I said, little was understood about disabilities in the first place. Most disabled children were institutionalized in horrible places like Willowbrook, and the world at large would not learn of these horrific "snakepits" (as described by Bobby Kennedy) until Geraldo's expose of Willowbrook in the 70s. And Willowbrook was just one of these awful places.
So, Connie grows up in a world hostile to those with disabilities. She isn't even allowed a chair for mobility until she is much older, so had little to no freedom.
Despite her overwhelming obstacles, Connie manages to get a college education- a feat difficult to obtain for any working-class woman in her generation, let alone one with disabilities. Connie has to fight for basic accommodations at every turn. When she is working, she's told she's no longer considered disabled as she is a college grad and able to work, so is not eligible for attendant care, even though she needs help with all her personal care. She then offers to go on disability, and she's told she will be denied as she is able to work. She also has a lot of trouble getting a job in the first place and has to aggressively advocate to get hired. There were no laws protecting the disabled from discrimination then.
Connie also grapples with the trope and overwhelming idea at the time that disabled people are asexual. Like most people, she wants a relationship. She starts to date a former classmate she vaguely knew at school, Ron Kovic, after he comes into her office at the university to sign up for classes. Yes, "that" Ron Kovic, who penned "Born on the Fourth of July" about his Vietmam war experience that left him a disillusioned paraplegic with severe PTSD, something else not acknowledged at the time. Ron and Connie's relationship is turbulent, on and off again for years, complicated by his inability to be monogamous and his untreated PTSD that leaves him with flashbacks, emotional volatility, outbursts of anger and bitterness about his disabled state. He and Connie eventually break up, and Connie begins to affirm what she has felt throughout her life, that she identifies as a lesbian.
Now disabled and a lesbian in a world that understands neither, she again has to fight and advocate for everything. Connie manages to have her own apartment and even spring another disabled friend from the horrors of a filthy personal care home. Connie's relationship with her parents is strained when she comes out as gay. Being conservative Catholics, they don't understand it at all. It takes Connie a long time to forgive and mend things with her mother, but she eventually does, and it is really heartwarming to see and amazing that Connie could find that forgiveness within.
Connie becomes a successful advocate and artist, and for a while owns a home that is like a safe house for lesbian women and artists.
I was sad to read that Connie has since passed away. She was a trailblazer and one of the strong voices for the rights of the disabled. Her sister, Patricia, (who goes by her childhood nickname that Connie gave her, pidgie, because Connie thought she looked like a little pigeon when she was ready for breastfeeding )who also has SMA, is a successful singer-songwriter. Oddly, from what I've read, Pidgie's memories of her parents are far more positive. Maybe Pidgie chooses to or can't remember the bad times. She's a lot younger than Connie, so it's possible her parents greatly changed in that time period.
Being the mother of a daughter with an "invisible" disability (Autism and ADHD), it made me grateful for all the supports and awareness the disabled have today compared with when Connie growing up. Granted, we still have a long way to go, and I still have to advocate for my daughter's needs, but it's nothing like in the 50's, when I shudder to think that doctors might have told me to "warehouse" her, in spite of the fact she has an above average IQ and does well in a mainstream school.
It's thanks to people like Connie , Ron, and Pidgie that the disabled have the rights they have today..and there are still voices now speaking out for needed advocacy.
This entire review has been hidden because of spoilers.
December 22, 2008
Awesome book dealing with disabilities and living the life as a person with disabilities. Connie Panzarino serves as an excellent role model to anyone who deals with life issues.
February 15, 2021
This is an autobiography of a disability activist. Who was also queer, poly, and generally comes across as lovely. There's a lot of desperately sad stuff. But loads of moments of air-punching brilliance. Plenty of stuff about the interminable faff ableism is. And wanking, perhaps most importantly. Really a lovely book.
July 29, 2014
A few of my friends knew Connie and loaned me this book. It, along with a talk my friends gave on her life, provided some very valuable insight on life with a disability. She sounds like a truly remarkable woman.
Displaying 1 - 4 of 4 reviews