Emily Urquhart Kindle ePUB Beyond the Pale – TXT, Kindle & PDF Read

characters Beyond the Pale

Read & Download ´ PDF, eBook or Kindle ePUB Ù Emily Urquhart Emily Urquhart Ù 6 review characters Beyond the Pale Drew the awestruck hospital staff to her sideA 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 grue. 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 reuired 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 httpwwwalbinismorg and download their information package which with clearly and calmly explain this family of genetic conditions There is than one type of albinism If you are still confused and have uestions 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 view spoilerThe ASIN number provided on Goodreads returned a Nope never heard of it on the US site 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 today and see that the Kindle format is now visible available and functional In fact the entire page for this book has been updated and expanded More on that later After waiting a couple months for 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 uick 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 finda 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 metaphoror even worse meant to be adorable When I finally started reading I uickly realized I needed to discard all my expectations The original description on 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 folkloremyth 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 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 situationcondition 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 Uruhart 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 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 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 Uruhart 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 euation 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 uoted 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 Uruhart 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 Uruhart 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 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 andwell 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 uite add up that began my addiction to genealogy I m glad Uruhart 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 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 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 hide spoiler

Read & Download ´ PDF, eBook or Kindle ePUB Ù Emily UrquhartBeyond the Pale

Read & Download ´ PDF, eBook or Kindle ePUB Ù Emily Urquhart Emily Urquhart Ù 6 review characters Beyond the Pale Some 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 critiue and part travelogue Beyond the Pale as the title suggests takes the reader into dark and unknown territory in the search for enlightenme. 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 JenUruhart 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 Uruhart seems to have inherited than a little of her mother s Jane Uruhart talent for fine writing

Emily Urquhart Ù 6 review

Read & Download ´ PDF, eBook or Kindle ePUB Ù Emily Urquhart Emily Urquhart Ù 6 review characters Beyond the Pale 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. I m giving this book a 35 rating which seems a little harsh in my head but I think it makes sense This is uite 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 olderWhat 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 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 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 in depthI 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 by this author and I enjoyed the experience of this one I just wish there had been 35s from me

  • Hardcover
  • 288
  • Beyond the Pale
  • Emily Urquhart
  • en
  • 13 October 2018
  • 9780062389169