I love this book. And I am having a very hard time writing a review that does it justice.

As a disabled human, it felt empowering. At the same time, it made me cry at all the ways our society and culture get wrong about disability and ‘otherness’ – the stigma, the ableism, the shame, the myth that humans are invincible, and the comparable myth that if someone gets sick or disabled, they are to blame, and that those who are different are less-than.

I first encountered this author with her article “SuperBabies Don’t Cry” in _Vela Magazine_, then followed her blog. I was thrilled when I saw that she had gotten a book contract to really tell this story – one that is typically hidden away, taboo, not discussed – that of having a disabled child.

I am reminded of the book _Mrs. Beneker_ by Violet Weingarten, first published in 1970, in which the author discusses the shame of having a disabled child, and how it would ruin their social standing.

This author feels completely different from Ms. Weingarten – Heather Lanier wants to tell the world about her daughter Fiona (“my girl”, as she calls her), and how being different isn’t a bad thing. She tackles the way our society treats disability, and how wrong we are as we do so.

She shares her family’s story with amazing, captivating language. Every word was clearly chosen with care, and so many lines are simply beautiful. For instance, she writes this about Fiona having a seizure: “Her limbs jerked in a foreboding rhythm, like she’d become the metronome of every person’s mortality.” And this about her newborn, second daughter, Petra: “Her eyelids were a set of tiny watercolors, feathered by capillaries in pastel purples and pinks.”

I love the way the author weaves in details – she doesn’t tell you everything at once, but instead shares ages, years, and places where they fit best in the story. You feel like you’re right there with her as she tries to get Fiona to eat, as she tries to understand what options are available for her child, as she comes to terms with not having the superbaby she imagined, as she researches the chromosome her daughter is missing (named Wolf-Hirschhorn syndrome), as she, for the first time, meets another child with the same syndrome.

The book is honest, raw, philosophical, historical, and personal. It looks at the construct of “disability” from all angles – including word origins and history.

The author talks about the contradictions of being a mother to “rare girl” – wanting something different, and what you expected, versus loving what you have.

She points out the importance of language in how we speak about people different from us, and traces the way “disabled” is an update to the word “retard”, which was an update to “feeble-minded.” And how the word “norm” was co-opted from carpentry and applied to human beings, when it wasn’t needed and is actually harmful. She wrote: “I was stumbling across a cultural pill, one that stuck in my throat and wouldn’t go down. It said: Bodily difference is charming so long as it doesn’t interfere with Normal. Or if it does interfere with Normal— if it is a Disability—it’s charming so long as it becomes history, a tale to offer as inspiration rather than a real life to live. Disability is okay if it’s overcome.”

The author goes as far back as the Bible, and writes of “the story of Jesus’s disciples, who found a blind man on the side of a road and asked their master, ‘Who sinned to make this man blind? The man or his parents?’”, concluding that “Disability [is a] punishment”.

She discusses the institutionalization of the “feeble-minded” in the early 1900s, and how they were “accused of higher rates of crime, sexual promiscuity, prostitution, and alcoholism”, and how that mindset and treatment continued unabated until lawsuits in the 1970s.

The author then shares information on how the Individuals with Disabilities Education Act (IDEA) came to be, and what it does today – keeps the disabled from being legally denied an education. How education teaches people how to communicate, which she claims (and I agree) –“is a fundamental human right.” As she wrote: “Language created space. … It made space for emotions, for needs and wants and refusals. I spoke English. Fiona spoke grunts and faces and fisted points. I could speak her language if I needed. She couldn’t speak mine.”

She also talks about how she was blamed for her daughter’s small birth weight – asked if she had eaten enough, or taken drugs – and also: “Here’s something a parent of a typical child probably never has to suffer through: a conversation with a doctor in which the doctor wonders aloud whether a child like theirs can be ethically killed.”

I highlighted a LOT of text in the e-book I received – 2,706 words, to be exact – so much of it resonated with me, as both a perfectionist and a disabled woman. And I added as many of the quotes as I could to GoodReads.

I think this book would be comforting and possibly helpful to a parent with a wee one who has any sort of disability, but would also be something parents of older disabled children could appreciate. And I highly recommend that anyone with disability in their lives in some way – either themselves or a friend / family member – read this.

As the author wrote: “Disability was not something to find blame for, because disability was not a problem. Through the neutral lens of science, my kid’s chromosomal anomaly was a product of diversity, and who could be upset about that?”

Note:
I received a digital ARC of this book from the publisher via NetGalley. This has no bearing on my review. I never guarantee a positive rating, and all thoughts and opinions are my own.

Raising a Rare Girl is a Mother's memoir of the sadness and the joy, the ups and the downs, the heartache and the hope she experiences from day to day whilst raising her Daughter who was unexpectedly born with a rare genetic condition. What I loved about this memoir is how honest Heather is. It would have been all to easy to only write about how strong she was for her child and how she fought for her from the first minute but instead, Heather allows us to see that she is a real person with real feelings and real struggles. My heart went out to her when she described how after being told about her Daughter's condition her first thought was to hand her child back to the Doctors and say I didn't sign up for this. Right from that moment in the book I knew I was in for a raw experience instead of the pretty version readers could have been presented with. In this way I truly feel the book can help other parents who are struggling to realise that they are not alone and are certainly not awful for having difficulties when raising a child with significant health problems. But it certainly isn't all doom and gloom, Heather shows us how she learned to appreciate the little things and to find special moments in dark times.
The only aspect of the book that I wasn't fond of was Heather's habit of idolising her Husband, often to the point of doing herself injustice. He was a little blaze with regards to his Daughter's condition and was 'so accepting' of it that he didn't see why he should have to put the hard work in and do therapy activities with her instead of just enjoying spending time with her playing etc. It often felt like Heather needed more support and was made to feel bad because she was trying to improve her Daughter's situation rather than just sitting back and accepting things as they were.
Thank you to NetGalley and the publishers for an advanced copy of this book in return for an honest review.

This memoir is a gift from the author. It is written so honestly and shares the family's innermost struggles and triumphs through navigating life with a child born with a rare syndrome. Heather is an amazing writer and having read her book I can confidently say she is an amazing human being as well.

As a therapist, I especially cherish how accessible (pun intended) this story makes the subject of inclusion and growing the community that supports disability. The details about her daughter Fiona's own unique developmental timeline are such an important part of educating the public. I hope this book will reach far and wide because it has the potential to help challenge ableism for adults as well (aging, dementia, etc.)
Thank you Heather for opening up your life to readers... I believe it will be well worth it!