Beyond the Pale: Folklore, Family and the Mystery of Our Hidden Genes

by Emily Urquhart

The story begins on St. Stephen's Day, 2010, in St. John's, Newfoundland, when the author gives birth to a baby girl named Sadie Jane who has a shock of snow-white hair. News of the child's icy locks travels across the hospital, and physicians and nurses from all wards visit the unusually beautiful newborn as she lies sleeping in her plastic bassinet. The maternity-floor janitor, however, feels something is amiss. Her eyes wide, incredulous and panicky, the janitor asks, "Is she an albino?" The idea is immediately dismissed, but after three months of medical testing, Sadie is diagnosed with albinism, a rare genetic condition where pigment fails to form in the skin, hair and eyes. She is visually impaired and faces a lifetime avoiding the sun. She will always have the otherworldly appearance that drew the awestruck hospital staff to her side.

A journalist and folklore scholar accustomed to processing the world through other people's stories, Emily is drawn to understanding her child's difference by researching the cultural beliefs associated with albinism worldwide. What she finds on her journey vacillates between beauty and darkness. She discovers that Noah's birth story is believed to be the first record of a baby born with albinism, and that the Kuna people in Panama revere members of their society with albinism, seeing them as defenders of the moon in the night sky. She attends a gathering of people with albinism in St. Louis and interviews geneticists, social scientists, novelists and folklorists in Canada, England and the US. But when she uncovers information about gruesome attacks on people with albinism in Tanzania, rooted in witchcraft, she feels compelled to travel to East Africa, her sun-shy toddler in tow, in an effort to understand these human-rights violations. Upon her return to Canada she discovers a family photograph from the past that might illuminate her daughter’s present.

While navigating new territory as a first-time parent of a child with a disability, Emily embarks on a three-year journey across North America and Africa to discover how we explain human differences, not through scientific facts or statistics but through a system of cultural beliefs. Part parenting memoir, part cultural critique and part travelogue, Beyond the Pale, as the title suggests, takes the reader into dark and unknown territory in the search for enlightenment.

Genres: Nonfiction, Memoir, Canada, Science, Disability, Medical, Folklore

288 pages, Hardcover

First published March 31, 2015

Reviews

[Hannah · Rating 3 out of 5]

I am fairly conflicted about this book and I have mostly myself to blame for that. I did not really read the description before requesting it and going mainly off the title of the book, I expected the folklore part of this book to play a bigger role. And I would have loved that book (the one I imagined in my head I mean), I am sure of it. Using something as personal as the birth of one's child with albinism as a stepping stone to discuss larger themes of folklore and discrimination and mystery? Yes please. And the book did do that, in part, but not in any kind of depth. This is especially sad considering that Emily Urquhart has academic experience in this area of research and it could have been glorious! The parts where she talked about different myths were definitely my favourite but I think they could have been more fleshed out and the conclusions drawn a little bit more researched and less on the nose.

On the other hand, who am I to tell her how to write her story? A story she obviously mostly wrote for herself and for her daughter to make sense of her now changed world. It is heartwarming to read of all the things she does for her daughter and the book gives a clear sense of how much Emily and her husband adore their daughter and want just the best for her. I do enjoy reading memoirs, so I was also fine with her telling the story of her daughter's first few years.

Where the book did lose me was in the weird structure - Emily Urquhart does jump from topic to topic and does not tell the story chronologically either, and sometimes that got a bit frustrating to read. I also was not the biggest fan of the visit to Tanzania - while I enjoyed reading about the myths and also the dangers faced by people with albinism in this country and learning more about Tanzania, Emily Urquhart's reasoning why she just absolutely had to leave her daughter behind to explore the connection she has with people in Tanzania (as a mother to person with albinism), was not convincing for me.

___
I received an arc of this book curtesy of NetGalley and Jacaranda Books in exchange for an honest review. Thanks for that!

[Jen Campbell · Rating 5 out of 5]

This has a massive personal connection for me. Will chat about it in my August wrap up. A wonderful read.

[Kitty G Books · Rating 3 out of 5]

I'm giving this book a 3.5* rating which seems a little harsh in my head, but I think it makes sense. This is quite a short book and it is a non-fiction all about Albinism, folklore, and the way Albinism is treated and seen worldwide. When Emily (the author) had her baby (Sadie) she was born with Albinism. This is a genetic disease that affects people when two genes are mixed in the baby. When Sadie was born Emily had no knowledge of her family history with Albinism, and so she started trying to find out as much as she could for both herself and Sadie, so she could help and explain things to her when she got older.

What I liked about this is that it's brutal and raw and not afraid to be. Some parts of the world Albinism and people with the condition are looked down upon as less than human 'zero-zero' in Tanzania. These places are dangerous places for people with this condition to live, becuase witch-doctors and people believe that the bones and body parts of Albinism sufferers is potent with healing properties. Many young people with the condition are brutally attacked and sometimes murdered by people trying to steal their body parts... This is a horrific reality.

What I found a little less engrossing was the fairytale element. I had hoped we'd see a lot more of that than we did becuase of how it was pitched, but it seemed to me that we really didn't get to see very much at all. Whilst I enjoyed the looking at the nasty side, and the good side of conventions in Canada (where they live) I wish the folklore and fairytale side had been brought in more. Maybe that's just me, becuase I enjoy that sort of thing, but I definitely wouldn't have wanted any other part missed out to put that in, so I guess what I'm really saying is I wish this was longer and could have gone more in-depth.

I learned a lot from this story and I am very, very glad I read it. It's both lovely, terrifying and enlightening, and a story I really enjoyed, but that they lived. I would certainly read more by this author, and I enjoyed the experience of this one, I just wish there had been more. 3.5*s from me :)

[Rebecca · Rating 4 out of 5]

In December 2010, the author’s first child, Sadie, was born with white hair. It took weeks to confirm that Sadie had albinism, a genetic condition associated with extreme light sensitivity and poor eyesight. A Canadian folklorist, Urquhart is well placed to trace the legends that have arisen about albinos through time and across the world, ranging from the Dead Sea Scroll story of Noah being born with blinding white skin and hair to the enduring superstition that accounts for African albinos being maimed or killed to use their body parts in folk medicine. She attends a NOAH (America’s National Organization for Albinism and Hypopigmentation) conference, discovers potential evidence of a family history of albinism, and even makes a pilgrimage to Tanzania to meet some victims. It’s all written up as an engaging present-tense narrative of coming to terms with disability: to start with Urquhart is annoyed at people reassuring her “it could be worse,” but by the end she’s ever so slightly disappointed to learn that her second child, a boy, will not be an albino like his sister.

(Emily Urquhart is the daughter of novelist Jane Urquhart.)

I was delighted to win a copy in a Goodreads giveaway.

[Amy | amy_aretta · Rating 4 out of 5]

A wonderful read exploring the many cultural beliefs and understandings surrounding albinism.

This is a non-fiction book focusing on a subject in which Emily Urquhart has poured her heart and soul. Having given birth to her daughter Sadie, Emily quickly discovered there was something that set her daughter apart from the rest - she had albinism. Being a passionate folklorist, Emily took it upon herself to discover everything there is to know about albinism - from all over the planet.

What I loved about this book was the unfaltering determination from Emily to unearth the secrets of her family so that she could one day share them with Sadie. You see Emily and her husband come to terms with the fact that Sadie will always be impaired in some way or another - but they combat that with pure courageousness and open minds. It was a truly eye-opening read and I would highly recommend to all, I had never read anything to do with albinism before and this one definitely taught me a lot!

[Yaaresse · Rating 3 out of 5]

I have been dithering on posting these notes. I read books, and then I say what I think about them. The notes are mostly for myself, but the GR model means saying things in public. If I want to use the site, that's the trade-off required. At the same time, I know that on the other side of this book are a probably very nice (and definitely emotionally-invested) author and a little girl growing up in the computer age who really didn’t have any say in being the subject of a book.

So, here goes. And it’s going to be a long one, I can tell already. So I’m going to give a down-and-dirty short recommendation first, then get all verbose and mouthy.

Short and sweet: If you are a new mother who knows absolutely nothing about albinism or what to expect or if you feel like no one has ever faced what you think you are facing, buy the book. Read it. Learn from it. But before you do that, go to the NOAH site at http:/www.albinism.org and download their information package which with clearly and calmly explain this family of genetic conditions. (There is more than one type of albinism.) If you are still confused and have questions, make an appointment with a low-vision specialist who can give you practical, informed answers. Once armed with facts, read this book and enjoy. Most of all? Stop panicking.

If you’re someone who enjoys reading memoirs about parenting or about first world people who travel to third world situations and seem to feel like they have some connection to what’s going on there because of one fairly superficial commonality, you will likely enjoy this book, but be warned that parts of the book describe violence toward and mutilation of children. Don’t expect Eat. Pray. Love.

Now for the long version:

This book and I got off to a rough start before I ever began reading it.

The ASIN number provided on Goodreads returned a “Nope, never heard of it” on the US Amazon site. Amazon US showed multiple formats, but not what they were or how to get to them. (Hey, we’ll tease you with it, but you can’t have it!) I checked Amazon today and see that the Kindle format is now visible, available, and functional. In fact, the entire Amazon page for this book has been updated and expanded. (More on that later.) After waiting a couple months for Amazon’s US site to get its act together regarding the Kindle edition, I finally caved and bought the hardback edition.

Being in the middle of three other books, I was not ready to start a fourth, but I gave the book a quick look when it arrived. The first thing I noticed was the small font size. It probably won’t be an issue for someone with average or better vision, but it surprised me given the subject matter. (The majority of people with albinism have low vision and are legally blind, It’s not unreasonable to assume some might be interested in this book since there are so few non-fiction books written about the condition.)

The hardback edition has a nice dust jacket of thick paper that has a slightly rubbery feel to it and raised lettering for the title on the front and spine. It’s a nice touch--both literally and figuratively--but I find dust jackets a bother while reading. I removed the dust jacket to find…a stark white cover. Not cream. Not off-white. Bright white. (If you’re picky about your books, wash your hands well, and do not set this book down on anything that has even a speck of dust on it.) That cover, like the font size, seemed an odd choice. I’d like to think it was completely random and unintentional, but I’ve known too many marketing people. I chuckled and held it up to a friend. Her response was, “Please tell me that’s not meant as a visual metaphor…or, even worse, meant to be adorable.”

When I finally started reading, I quickly realized I needed to discard all my expectations. The original description on Amazon has been rewritten completely, so I cannot defend nor illustrate how I came to my prior assumptions; however, I expected the book was primarily a look at albinism vis a vis cultural folklore and myths, and that the memoir aspect was secondary. I’ve long hoped someone with the academic chops would tackle the folklore/myth angle as cultural anthropology, and by that I mean take a non-sentimental, research-driven, objective look at how albinism has been depicted in myth and folklore throughout the world at various times. I imagined such a book would tackle not only the current atrocities in East Africa regarding witchcraft and harvesting of body parts, but also the Asian myths tied with the reincarnation of Bai Suzhen (White Snake); the Maninka’s myths connected to Faro (which I suspect has some tie-in with the East African myths given the Mande versions of this myth have Faro cut into sixty pieces as a purification sacrifice), the Hopi Nation’s “children of the Moon” healers, the Guna (preferred spelling) people’s myths about albinos guarding of the moon from dragons during eclipses, the wives’ tales prevalent in the Southern US concerning biracial or incestuous parentage, etc. Perhaps such a book would delve into the myths created by Hollywood (none of which are positive) and literature (rarely accurate or positive).

This is not that book. And, really, I suppose the only person to blame for my disappointment is me. The current description on Amazon for Beyond the Pale is accurate; the previous one was very vague.

Basically, Beyond the Pale is what I call a “mommy memoir.” The usual formula for the sub-genre is thus: "our child didn’t turn out the way I expected; I had a big learning curve" scene (usually includes initial panic, overcompensating, emotional exhaustion); an acceptance scene, a regrouping and waxing poetic about how the challenge is a “blessing," and (often) how it’s now OK to play genetic roulette again because this big horrible tragedy turned out to be not that horrible after all. Mommy memoirs are all about the emotional journey of the parent. The better ones offer some facts and education thrown in on the side. (Dads sometimes author these, too, but “daddy memoirs” doesn’t have the same pop. Alliteration always wins.) Other mothers, especially other mothers with children who have the same situation/condition, LOVE these books, and rightfully so. They fulfill the need some people have to be part of a tribe and to bond over shared experiences. The thing about mommy memoirs, however, is that they are primarily and always about the parent. They cannot give the child’s POV nor can they provide objective information. The format does not lend itself to those functions.

And as mommy memoirs go, this one is OK. Urquhart writes well, and her information on albinism and about the situation in East Africa is both accurate and current. Her explanation of genetics is elementary, but it is also clear and concise. Her bibliography is outstanding. (The local reference librarian will be getting a workout in coming weeks helping me locate some of the more obscure sources.)

The book is divided into three parts.
1. The first part covers the birth of her daughter, the couple’s grappling with trying to learn about albinism, the parents doing a lot of scatter-shot research, their “connecting” via NOAH conferences, and their first awareness of the atrocities in East Africa.
2. Part two is mostly about the author’s trip to Tanzania and her response to what she sees there.
3. Part three is mostly about the author’s genealogy research as she tries to trace the occurrence of albinism in her family tree, although it does very briefly touch on the American myth about isolated albino villages. (A myth I've never heard of outside some Hollywood BS horror movie tropes. Must be a northeast thing.)

While there is (very) brief mention of myths concerning Noah (he of the Ark fame), the Guna (Kuna) of Panama and Colombia, and the new myths created by Hollywood, we’re talking a couple of paragraphs, at most, on these. There’s slightly more (about six pages, two of which are a poem) about American “albino farm” myths, but the relatively small amount of folklore discussed focuses on Tanzania. Even that does not go into depth.

Urquhart gets extra points for bringing up the subject of eugenics—both past and future—because most people either don’t know or don’t dare. Still, she doesn’t delve deeply into it. I don’t have the book in front of me, but I don’t recall any specific mention that albinism was one of the “undesirable conditions” some state eugenics boards used to conduct involuntary sterilization as late as the 1950s. (It was.)

As I said, I am the wrong audience for the book. I come at this topic from the other end of the equation, and I am not a parent. Albinism runs in my family, and my siblings and I had friends with the condition. Simply put, a big deal wasn’t made of it. Maybe because of that, I find it hard to have empathy with what I perceive as lot of hand-wringing, angst, and “how this condition someone else has upends my life.” Judgmental? Probably. In the book, a pediatrician is quoted as telling a distraught parent, “Why are you crying, it’s not like she has Down’s Syndrome” That pediatrician pretty much verbalized my response through most of this book. Urquhart saw it as unfair to that parent for the doctor to compare one condition against a worse one. I see that pragmatic comparison as an excellent way to put things in perspective and to avoid a lot of well-meaning people enabling pointless pity parties or engaging in useless patronizing of the child. It’s highly likely Urquhart and I will never agree on this.

So I am the heartless reader who muttered and rolled her eyes over the first chapters with the “woe is us” scenes, the extensive medical network, the obsessive Googling, the hyperactive imagining of all the horrors the future would hold, the "how life as she knew it was no more", etc.

I know. I’m a terrible person. I've been told as much. And I already told you, I’m not a mother: don’t have a maternal bone in my body. I'm also pragmatic and have a very low tolerance for drama. I only claim the perspective of having once been the child, so my POV is completely one-sided. All I could think was, “Damn, but I and a lot of other folks should be grateful our mothers didn't have the internet!”

Then I got to the part where the author wrote “To know her {her daughter}, I feel I must go there {Tanzania}," and...well, I sort of lost all pretense of neutrality at that point. I’m pretty sure I said aloud, “Oh, bull____.” I may have said several other specific non-repeatable things. in fact, I know I did.

OK, peeps, reality check: A child with albinism born to Caucasian, affluent, educated North American parents is probably going to get bullied some (ok, a lot) and experience a few relatively minor (character-building) challenges, but it’s highly unlikely that child will ever be hungry, homeless, denied access to schooling or medical care, forced to do physical labor without sun protection, or chased down the streets of Vancouver by a machete-wielding mercenary harvesting body parts to sell to witch doctors. And why on earth would anyone consider taking any child on a 30-hour plane trip to spend three weeks in a stressful environment known for deadly contagious diseases? There’s not enough sunscreen or Prozac in the world. The child wasn't old enough to remember a single thing about it anyway! (Spoiler alert: she finally is convinced to leave the kid with the grandparents. Everyone who took a plane from Canada to Tanzania in 2012, you now may offer profuse thanks to Grandma and the travel agent. Even the author later realized it wasn't the best idea.)

I almost stopped right there, but morbid curiosity set it as to how this trip would go. Suffice it to say they survived, but my conviction that I will never set foot in Rhodesia or Tanzania is cemented. The telling of it was entertaining, though.

The genealogy search, I get. I’ve done it myself. It was searching for the missing albino distant cousins about whom family stories didn't quite add up that began my addiction to genealogy. I’m glad Urquhart was able to find someone still living to fill in the blanks for her. I’m also glad for her that the story was fundamentally a positive one.

If I were into this type of memoir, I might rate this book higher. GR ratings are based primarily on enjoyment, and I can’t really say I enjoyed the book beyond a “like” level. Someone with a different (or no) experience with the content will feel differently. I admit part of my feelings towards it are because it’s not the book I wanted it to be or thought I was getting: cultural anthropology and folklore history. That’s not the fault of the book or the author, although I do blame whoever wrote that first Amazon description. Yes, there is a little information about myths and folklore in the book, but it’s cursory. Most of it is on Wikipedia or the NOAH website. Still, maybe this book will be enough to spur someone to write a more in-depth and academic book on the subject.

Meanwhile, a search on “albinism” at my county library’s website brings up only a couple of novels (Hello, Elric, we meet again), an ancient book on eye conditions, and one really patronizing and marginally insulting children’s book about albino animals. This book will improve that meager offering, and our librarian says they would like to have it. There is a silver lining to having to order it in print after all.

[Debra · Rating 4 out of 5]

Given that I am Canadian, it is ironic that I learned about this extremely well-written, non-fiction, Canadian book from the very British Jen Campbell, author, poet, and Booktuber extraordinaire. Thank you, Jen!

Urquhart's moving and informative book recounts her adjustment after her first child, a daughter, is born with albinism. The book is part memoir, part travelogue, part journalistic investigation, and part folkloric study. I highly recommend it. Urquhart seems to have inherited more than a little of her mother's (Jane Urquhart) talent for fine writing.

[Jess · Rating 4 out of 5]

Read this review and more on my blog!

I feel like this year is the happiest I've felt with my reading habits for the longest time. When you step into book blogging it feels as though you must read what everyone else is reading, not because anyone else tells you that but because, naturally, you want to join in when other bloggers are really excited about a book they've been reading. I really tried, but I don't read primarily YA so a lot of the books that are very popular in the book blogging community tend to pass me by. For a while that bugged me, and now it doesn't because all that matters is that I enjoy blogging and I enjoy reading.

This year I've really gotten into non-fiction. For a while I was convinced non-fiction just wasn't my thing. When I was younger I was interested in stories, in fiction, I wasn't interested in reading a memoir. As I got older most of the non-fiction I read I encountered at university, and when you associate non-fiction with essay writing it can be hard to seek out non-fiction purely for enjoyment's sake. Over the past year or so, however, I've really begun to enjoy non-fiction. I love non-fiction centred around history and historical figures - I'm a huge history nerd - but I've also enjoyed reading some literary criticism and memoirs, and recently I read and enjoyed Beyond the Pale.

I had no idea whatsoever that this book existed until I saw Jen Campbell mention it on her YouTube channel and it sounded fascinating. I knew very little about albinism, but I had encountered it a little during my MA while I was researching witchcraft, and the idea of a folklorist exploring the beliefs surrounding albinism and looking into her own family history sounded right up my street.

Emily Urquhart's writing style is very readable. When she's discussing the early stages of her daughter's diagnosis and the different types of albinism there are it could have been easy for me to get lost - I'm not scientifically minded at all - but I was never confused, nor should I have been. This book isn't a science book, it's a memoir and a travel book and criticism all rolled into one, and while albinism is the focus Emily pays so much more attention to the people with albinism than the condition itself. Everyone she meets is treated with such respect and her daughter, Sadie, is just adorable.

There's a real spectrum of beliefs in this book, from the biblical suggestion that Noah had albinism and therefore the condition is associated with being the child of an angel in Christian theology, to the more heartbreaking realities in Tanzania in which people with albinism literally live in fear of their lives. Some of the stories may be a little hard to read but they're worth reading: it's incredibly important that we don't remain ignorant to some of the atrocities that people with albinism are forced to face on a daily basis.

I really enjoyed this book. It satisfied the craving I've had for non-fiction all year, and once again reminded me to continue to broaden my reading habits. The only reason I gave it four stars rather than five was because I was hoping for a little more along the lines of folklore; after a while it seemed to disappear from the narrative completely other than the times in which Emily reminded us she's a folklorist, but I still really enjoyed reading about her trip to Tanzania and her research into her family history.

Super interesting read, I highly recommend it!

[Tracey Allen at Carpe Librum · Rating 2 out of 5]

Albinism is a rare genetic condition where pigment fails to form in a person's skin, hair and eyes. Those with albinism suffer from poor vision and sensitivity to the sun, often developing skin cancer. When Emily Urquhart gave birth to a daughter with albinism in 2010, her life took an unexpected turn.

Living in Canada, Urquhart set out determined to learn everything she could about the condition, and the implications for her daughter's health and wellbeing in the years to come. Beyond the Pale is Urquhart's memoir of this period of discovery and as the blurb says, it is part memoir, part cultural critique, and part genetic travelogue.

Urquhart consulted a myriad health professions and attended the NOAH (National Organization for Albinism and Hypopigmentation) conference in the USA. She travelled to Africa to meet children with albinism and hear about their traumatic experiences first hand.+

Urquhart is a folklore scholar and journalist and I was very interested in reading about the superstition and folklore surrounding albinism in different cultures and across time. Unfortunately there just wasn't enough and given this was the primary reason for my reading, I was deeply disappointed.

The last section of the memoir covered Urquhart's efforts to map her family tree and trace the albinism gene back through the generations. She shares all the ins and outs of her family tree and I quickly lost interest in this geneology deep dive.

In hindsight, I think I'd have been better off spending 30 minutes learning about albinism online, rather than reading this specialised memoir. It really wasn't for me.

Recommended reading for:
- memoir lovers
- parents who have a child with albinism
- those with an interest in geneology

+ In Tanzania, 1 in every 1429 babies born have albinism and the population believes those with albinism have magical powers. As a consequence, those with albinism are often hunted and their body parts are sought after for use by witch doctors to heal the sick. Tragically, it is sometimes the family members who offer their children to the albino hunters in return for money. Not something Urquhart's beautiful daughter Sadie will ever have to worry about.

[Karen M · Rating 4 out of 5]

Such an interesting book! I'm glad I finally picked it up as I learned so much about albinism and how it affects people around the world. I loved how Urquhart tied her research into folklore -- it really does show how fiction and myths can help us understand something that is very real.

I'm reviewing this book for the GritLIT blog tour, so stay tuned for a longer review later this week!

[Philippa Mary · Rating 4 out of 5]

A very interesting book about a topic I knew very little about. It is written really well and is easily accessible - you don't need any prior knowledge of albinism. Please go read this book! I highly recommend it.

[Birgitte Bach · Rating 3 out of 5]

Interessant bog, men jeg synes ikke den var særlig godt formidlet.

[Cherish · Rating 3 out of 5]

Not a smooth read, but interesting and informative. I learned a lot about albinism through this book.

[George · Rating 2 out of 5]

Quite disappointed by this I had really high hopes for this book. I thought there works be more facts and folklore surrounding albinism but what it mainly felt like was following someone coming to terms with being a new mother with some different challenges then your 'standard' new mother and listening to a friends aunt walk you through her findings on ancestry.com. The only parts i found interesting/enjoyable were the medical facts and the tanzanian perpective. Perhaps I should have looked into this more and I would have been less disappointed.

[Adrienne · Rating 4 out of 5]

"Beyond the Pale: Folklore, Family, and the Mystery of Our Hidden Genes" was not quite was I was expecting. This book is a memoir of a mother who has a daughter with albinism, or who is an "albino," but the author says that term is not politically correct. I wish she would have told us what people with this condition prefer to be called, however, the author used the term "albino" throughout the book. The author shares her story about having a child with a disability (people who have albinism tend to have low vision (difficulty with sight) and their skin burns easily and quickly). I was curious to learn more about albinism, having only covered a snippet of information about it being a genetic condition from my 9th grade biology class. The author tells us of her struggles, her fears, and her hopes and dreams for her daughter, visits Tanzania to learn about the suffering of those with albinism in remote areas (they are perceived as magical beings, and their body parts are wanted for potions and such). The author learns that people with albinism can live happy, fulfilling lives, as she spends time with people with albinism in Tanzania and as she researches her own family tree to find relatives that also manifested the recessive gene mutation. This is a great memoir of a mother's acceptance and love for her child, albinism or no, and the journey she took to learn more about it, both scientifically, in her family, and in folklore. I was expecting it to go more into the folklore side of things, but the author kept that concise. I found it interesting that she explored the urban legend of the Albino Colony in New Jersey, as well as the urban legend of the "witch" with white hair who would tend a garden in the middle of the night in the rain. Included in the book is a poem describing the latter legend, as well as family photos from the author. Her daughter is beautiful with her fair hair, and I found it to be an encouraging book for those who have or know someone who has a condition or disability. The book is encouraging in the fact that it states that those with albinism, and others, can have happy lives. One of the author's relatives with albinism was an early chiropractor, for example.

This is a book for those who want to learn more about albinism, who are interested in memoirs, especially those about mothers and children, and for those looking for hope in a time of circumstance. This book kept my attention throughout, although there were times, for me, it seemed the story dragged on a bit describing the life of a parent. As I have no children, that part didn't interest me as much personally, but it did contribute to the overall memoir and the story of a mother's endless love for her child, so it was an important part of the story, my personal interests and experiences aside. It was a good way of "showing, not telling" about her experiences as a parent of a child with albinism. Others may relate more to the parenting, and may see how much they have in common with the author's parenting experiences.

Overall, I recommend this book; it was a pleasant read, and I learned a lot: about parenting, a mother's love, albinism, and overcoming adversity. If the author wrote a sequel detailing her daughter's journey growing up and going through the teen years, as well as beyond, or if Sadie herself would write a memoir, I would love to read that as well.

I received "Beyond the Pale" for free from a Goodreads First Reads Giveaway.

[Kate · Rating 3 out of 5]

After her daughter was born with albinism, Emily Urquhart began researching the genetic condition through the lens of her own field of study, folklore. She looks at historical western folklore, for example, people with albinism in "freak shows" or remote communes (there are stories like this for many conditions with particularly recognizable phenotypes), and the heartbreaking contemporary stories from Tanzania of the power and wealth to be attained through magic done with the body parts of a person with albinism. These tales are widespread and directly contribute to the kidnapping, mutilation, and killing of people with albinism, which has only recently been acknowledged and fought against; the first conviction for such a crime was in 2009. People with albinism have been seen as ghosts, angels, and bad omens throughout history. Urquhart also looks through her own family's history to track the gene for albinism through the generations, finding pictures and stories to link her daughter with her family from 100 years ago. I really love the approach of juxtaposing folklore and storytelling alongside history and science - it always makes for a very interesting perspective on any topic, and this one in particular.

[Louise · Rating 4 out of 5]

I received this book from the Goodreads First Reads program. This is a fascinating memoir about a woman learning about her daughter's genetic condition- albinism. I particularly enjoyed reading about her experiences in East Africa. Although 'enjoyed' seems like altogether the wrong word. The atrocities that are happening over there, even in contemporary times are reprehensible. I am very glad to have read this at the same time as 'Born too White', a BBC documentary aired, which also focused in on Tanzania. Hopefully media like this will raise awareness of albinism and what life is like for those born with the condition.

The author also goes into detail about her ancestors, some of whom, as she discovers, also have albinism. All the while, she describes how her daughter is learning and developing. She also describes her fears over her daughter's future and eventually comes to the understanding that she will have to shift her perspective on the world to appreciate what her daughter's future will look like.

I'd really recommend to anyone looking for some lively, yet touching non-fiction.

[Jennifer · Rating 4 out of 5]

Beyond the Pale was an interesting and easy read. It follows the author's journey of trying to understand her family's genetic history after her daughter is born with Albinism. The family history portion of the book was the least interesting to me. However the author also travels to Africa in order to better understand some of the dangers that those living with Albinism face. She does conduct a variety of research also to better understand some of the myths and folklore surround Albinism in a variety of contexts and cultures. The stories from Africa were eye-opening to the kinds of mistreatment and danger that those with Albinism face in the various cultures was eye-opening. While the stories from Africa were emotionally difficult to read, information from other cultural contexts was uplifting and encouraging. If you are looking for a how-to guide in regards to medical or psychological information about Albinism or raising a child with Albinism, you won't get that out of this book. The global understanding however was worth the read in my opinion.

[Jennifer Benson · Rating 4 out of 5]

“Beyond the Pale” is meticulously researched book, moving through albinism, mythology and folklore, family genealogy and Tanzanian atrocities in beautiful detail. Emily Urquhart’s ability to weave in the emotional upheaval at varying stages pulls at the reader’s heartstrings throughout. The fear of the unknown at the beginning to the acceptance and what the future will hold is a gradual build up to the horrifying darker tales that lurk in the middle of the book. The story ends on powerful, hopeful note, after a journey into family discovery.
My overall impressions were that author wanted her child to feel some sort of “sameness” in a world of pigmented people, just as any of us do. It’s how myths and folklore form. We tell each other stories to belong, to be part of the group. “Beyond the Pale” is a gut wrenching read for anyone wishing to take in into their hearts.

This book was awarded to me through Goodreads First Reads.

[Jill Robbertze · Rating 5 out of 5]

WOW, what an interesting book : The author, a journalist who also studies folklore is shocked when her first child is diagnosed with "Elbinism", a rare genetic disorder where the skin and hair lack pigment and vision is impaired. Emily Urquhart sets out to learn all she can about this condition and how different cultures treat those afflicted. Some of the horrific stories that she encounters, send her off on a mission to Tanzania, Africa to learn more and to support a charity called "Under the Same Sun" who "......help people with the genetic condition of albinism overcome often deadly discrimination through advocacy and education." Later Emily researches more about her own family history and finds ancestors who were also Elbinos. A beautifully written and informative read.

[Cindelu · Rating 3 out of 5]

I won this book on Goodreads.
First of all the little girl in this book is so adorable. I love her parents too for letting her be just who she is. It really opened my eyes on the issues with Albinism and the horrors that are put upon these people in other countries. A really interesting and enlightening read.

[Nancy]

I could not finish this. I did learn some interesting facts about albinism, but the tone was dreary, sad and morbid. When I got to the part where the author talks about Adam losing his arm to poachers, the book took a turn for the disturbing and unsettling, and that is where I had to stop. I can't.

[DeB · Rating 4 out of 5]

Interesting personal story of a family's realization that their daughter has albinism, their efforts to understand what those effects will mean to her well being, the unclear genetic history in the family which is at the root of this "mutation" found in all life forms and their travels and education to achieve this. Recommend highly.

[Print Teach · Rating 5 out of 5]

I absolutely loved this book! Part biography, part fairy story, part literature review, part research project, part advert for ancestry websites... It's a fascinating mix of genres - but they all blend together to make a very readable, thoroughly enjoyable modern folktale-esque story. A really good read.

** Free copy received through GoodReads giveaways **

[Zuzana Be · Rating 3 out of 5]

Quite interesting memoir about a mother and her daugther with albinism. Emily is trying to find the roots of the albinism in her family and how is it perceived by other people and in the folklore.
I had no idea about albinism in Africa and how terrible are people treated there...

[Alicia · Rating 4 out of 5]

Beyond the Pale: Folklore, Family and the Mystery of Our Hidden Genes was an enlightening read and the things that I learned within it still weigh heavy on my heart. She's an academic, but the book tries balance personal narrative with research. Psst... that's Sadie on the cover.

[Denise Loveless · Rating 3 out of 5]

Vey enlightening on albinism and a families' journey through knowledge and acceptance.

[Clivemichael · Rating 3 out of 5]

Interesting, wandered a bit, fairly self reflective stream of consciousness. Some great descriptions but more of a personal journal than an informative, definitive exploration of the sub title.

[Mary · Rating 3 out of 5]

Lovely writing but overall I was disappointed. Not as much folklore as I expected from the blurb. She kept jumping between her own story and folklore.

[Jessie B. · Rating 4 out of 5]

An interesting look at the condition of albinism from both personal and cultural perspectives