Happy Spina Bifida and Hydrocephalus Awareness Week 2021

This week is Hydrocephalus and Spina Bifida Awareness Week. The last time I blogged about it was in 2018.

If you don’t know my hydrocephalus story yet, find it here: https://justkatherineblog.wordpress.com/2015/10/22/my-story-growing-up-with-hydrocephalus/

This week, I will be wearing yellow as it’s the awareness colour for hydrocephalus. I have yellow eyeshadow. Please help to do whatever you can to raise awareness for hydrocephalus.

I’m particularly grateful to Shine Charity (formerly ASBAH) who helped me through some hard times and were always there to listen and advise.

The things I have done to help raise more awareness for hydrocephalus have been to blog about it now and then on my blog. I have shared my story and advised families on Facebook and I’m always ready to share what it’s like to be me with not just hydrocephalus but also Cerebral Palsy and 4 visual impairments.

I give thanks for each and every day I don’t have hydrocephalus symptoms and that my shunt is working.

Pregnancy and Infant Loss Awareness Day 2021: My Story

Today is Pregnancy and Infant Loss awareness day and it’s the first time I’ve blogged about it. I’m surprised about this because I have talked about many aspects of my life here. I’m not a mother myself yet and have been told by medical professionals that could be possible with specialist care and lots and lots of physical support but do have my own story about infant loss.

On 22 December 1981 at Kingston Hospital in the South London borough of Kingston upon Thames, England. I entered the world with my identical twin sister Natalie.

From that moment, our fight to stay in the world began. We were moved to another hospital hours after being born.

We had numerous complications from premature birth and our lives were in constant danger of being lost. We fought for survival together for nine days until Natalie passed away.

I continued my fight alone, and came home.

Life with my disabilities is full of challenges and all through my life I asked myself what made me survive. I believe Natalie had some part in the fact I am here today and she passed her strength to me. She lives through me.

Everything I have done in life, every special occasion, I’d wish she was there with me. I felt like she was. When I have doubted things, been scared or happy I knew she was protecting me.

I would have loved for her to survive and for us to have experienced many of the “this could only happen to an identical twin” moments that other twins I’ve known have experienced.

What would we have gone through? I’ll never know and can only speculate but I do know those 9 days with Natalie were a gift to me although I have no memory of them.

The time between our birthday and her death will always be difficult for me but for me on a personal level and also because of the time of year it is.

My family never stopped celebrating our birthday because of grief and painful memories when I was young and while I lived with them and now I’m married, I still celebrate it, Christmas and New Year. It’s a time of hope and new beginnings, too.

It’s a gift to know Natalie was in the world.

What happened to Natalie has taught me that from tragedy, other things can happen and if we hadn’t have been born together I wouldn’t be here.

Even though I never knew Natalie, I have loved her my whole life and will never stop loving her. She gained her angel wings in 1981 but to me she is always here.

Although Infant Loss Awareness Day is a sad one, it’s also a time to feel happy about those who were in the world for even a short time, as every life is a blessing.

If you have experience of infant loss, my thoughts are with you today and always.

Happy International Physiotherapy/ Physical Therapy Day

While listening to the radio today, I found out that today is International Physiotherapy (or Physical Therapy if you’re from the US) Day.

The Oxford Advanced Learner’s Dictionary defines physiotherapy as the treatment of disease, injury or weakness in the joints or muscles by exercises, massage and the use of light and heat.

As a person with Cerebral Palsy and Hydrocephalus, I grew up with doctors recommending this to help me with my strength, stamina range of movement and high muscle tone.

As a baby, I had physiotherapy sessions at home and then as I grew the sessions were at school or a Paediatric Assessment Center. I was taken to therapy in the therapy pool and my earliest sessions were that therapy and exercises focused on head control.

My other therapies were eye patching therapy to help strengthen my eye muscles and help me turn my eyes outwards as I had crossed eyes as a baby and was diagnosed with bilateral sixth nerve palsies which mean that the abducens nerve, the cranial nerve in charge of turning my eyes outwards, is paralysed. I have tunnel vision and no lateral vision because of this. I also have bilateral squint, (strabismus), nystagmus (uncontrolled involuntary eye movements) astigmatism and hemianopia (blindness in half of both eyes with a severely reduced visual field for remaining vision).

No therapies will help these eyesight difficulties since they are all caused by the damage to my occipital lobe (the vision area of my brain).

I had physiotherapy in the form of stretches for my movement. limitations.

In terms of my hydrocephalus, the therapy and advice took the form of recommendations for head and neck positioning when sleeping, since my symptoms of shunt blockage or malfunction were a very bad headache after having been asleep for a few hours and as a child I would typically wake with nausea, vomiting dizziness and disorientation at any time between midnight and 2AM which my doctors told my parents was a classic symptom of raised intracranial pressure. I would otherwise be sleepy and not very responsive.

I was diagnosed with hydrocephalus when I was two weeks old after grade 4 (severe bilateral brain bleeds).

I was born at 29 weeks, one of identical twins.

My Cerebral Palsy diagnosis came soon after and doctors and therapists focused my therapies on my whole body since I have spastic quadriplegia which affects my arms, legs and trunk as well as causes weak muscles on the left side of my face and some difficulty with swallowing pills and with eating different textures of food as well as the need for an adapted spoon, plate and cup.

My balance, strength stamina and coordination are also affected. I have subluxated (half dislocated) hips and I have scoliosis (a curved spine), kyphosis (a hunched posture) and lordosis (a larger inwards curve on my lumbar spine than is normal). My hips have a rotational deformity and this affects the position of my knees and feet. I have high foot arches which are a foot deformity associated with Cerebral Palsy and my feet turn inwards. My ankles are very tight and I can’t move my toes.

When I was diagnosed with my disabilities, most people who saw me talked about spastic quadriplegia as my diagnosis and some talked about mixed CP because of the balance and coordination issues (which are usually part of ataxic CP). Dystonia was also mentioned as I have involuntary movements.

My experience of physiotherapy is that I was always nervous about the sessions as I knew the stretches would be painful for me because I can’t relax my muscles by myself. I also knew that telling people I didn’t want to do my therapy would not help me, so I went to my sessions.

When I was five years old, therapeutic riding therapy was prescribed by my doctor and I went to two specialist riding schools between the ages of 5 and 17 for which there were long lists. These were part of the Riding for the Disabled Association (RDA) which is a UK organisation that helps to bring together a network of specialist horse riding schools so that children and adults with disabilities can learn to ride and learn about horse care. There are people to physically help the riders too. I have fond memories of this therapy and horses are still my favourite animals.

As an adult, I have had massage therapy and we have an infra red lamp which we use for pain relief and relaxation. This really does relax me and makes me sleepy. Other heat therapy I have is using a hot water bottle in bed in winter or placed near my feet to help my circulation.

I have therapy bands although I am unable to stretch them myself as well as a soft ball to hold in my hand and try to squeeze (I haven’t quite mastered squeezing yet).

I have had a lot of different kinds of physiotherapy in my life and am fortunate that my husband is able to keep doing that with me. The stretches will be necessary for the rest of my life.

I was encouraged to find activities I enjoy and I would encourage anyone to do the same. I love being in the pool. I have fond memories of my horse riding days.

Any kind of exercise tires me out but that’s just the way my body reacts.

It’s not unusual for me to have pain, muscle spasms and involuntary movements during exercise or afterwards and I can even be sleepy.

I have slept for hours in the past after therapy sessions at my local hospital. In my experience, sleep is healing, too and a good compliment to exercise.

Blog Tour: Patience by Victoria Scott @AuthorVScott @Aria_Fiction

I posted a review of this back in April this year after I’d finished it as I couldn’t wait to start it after getting the ARC from Aria & Aries. I am thrilled to be kicking off the blog tour today for this wonderful book so I am reposting my review.

My Review:

Patience is many things: a HUGE fan of Take That, a person with long blonde hair that many people envy. She’s direct, funny observant and a sister and daughter.

Patience also has Rett Syndrome. She is dependent on carers and family in every aspect of her life. Unable to communicate verbally, she gets her feelings, wants and needs across.

Patience by Victoria Scott goes deep into the lives of Patience and her family and carers. She lives in a residential care home with others with disabilities.

As a person with Cerebral Palsy and Hydrocephalus who, like Patience, requires care and support in every aspect of my life, I was immediately able to identify with her. I cannot give an opinion on life in a care home, but can about the difficulties and challenges with finding care, support and services that meet my needs.

I identified with, and was glad that, author Victoria Scott included people with a variety of disabilities (Cerebral Palsy included) in the plot as this had me saying “yes, that’s me!” and the succinct description was spot-on with the specific needs it mentioned.

Patience’s parents are fighters, and there’s a very real conflict between them about her needs and their ability to provide the best they can for her. She is at the forefront of their lives, as is her sister Eliza.

There’s no jealousy or conflict between the sisters though, and they have a very good relationship which is tender and beautiful. One moment in particular is very raw when Eliza goes to Patience late at night.

Eliza has her own struggles, with life and love so it was great to see her “slice of life” too.

Their dad, Pete, was largely absent through work as he works in Qatar for the higher salary and his journey to get any type of job, even in construction, to help his family is really humbling. I longed for the moments when he came back. Even in absence, he’s thinking of his family.

There are some real conflicts though between him and his wife due to the circumstances of their life.

What would you do if you had the chance to work with the doctor who wanted to do a medical trial that could improve the lives of many children and adults with Rett Syndrome? Patience’s mum jumps at the chance but this creates conflict with her husband.

Her determination is heartwarming in a heartbreaking yet hopeful situation. Their pre-diagnosis journey was breathtaking and really made me stop and think. The place that had in the story was perfectly thought out.

There are parts that made me smile and others that made me identify so much with Patience’s life. The mix of frustration, worry happiness and big dreams.

Patience is a heartwarming, raw emotional amazing portrait of a life some families could not have imagined, but that they embrace.

Patience and her family are people I just wanted to hug and who I would love to actually meet.

I have not come across many novels about life with disabilities, and they are something I have felt sorely lacking in the book market since I was young.

Patience is a real unforgettable treasure of a novel and I loved every page. Those who don’t have insight into what it is to have complex needs and use a wheelchair like Patience and like me and so many others with disabilities soon will after finishing this.

I already knew about Rett Syndrome before I found this book but I found myself on YouTube wanting to know more. It’s a very current novel as the medical trials are a real thing and that made it even more powerful for me.

Thanks to Victoria Scott and Aria for my ARC in exchange for an honest and voluntary review.

5 sparkling stars.

One of, if not my favourite books of the year. I congratulate Victoria Scott hugely for writing a novel that is so immersive and real about disability and the fears, hopes and struggles that those of us who have severe disabilities face. I hope it goes a long way in the never-ending fight to change societal attitudes.

Patience is a novel everyone should read. It’s raw and emotional, but also an enlightening pick-me-up.

If you, or someone you know has disabilities and has ever felt alone, you are not with this book.

It’s like a huge comforting hug that says “welcome to my world and I understand you.”

I would LOVE this to be made into a film, I think it would be amazing. The book has also left me rooting for the trials for Rett Syndrome, but it also brings home the importance of accepting people just as they are.

There are so many life lessons in this novel, and I felt as if I were living the family’s experience.

If I could recommend a novel to the people who made my life difficult as they did not understand what I live through, Patience would definitely be it. Even though I don’t have Rett Syndrome, my challenges are similar to Patience’s in terms of mobility and care.

The novel makes me feel extra happy for what I can do, even thought it’s in a different way to others.

I think it will spark debate about care facilities and the role of family in care as well as shedding light on what people really live through.

Patience is not one to be pitied and I will never forget the day I discovered her and this book.

Harlequin Dreamer Blog Tour: In the Key of Family by Makenna Lee @MakennaLeeBooks

In the Key of Family by Makenna Lee is available on May 25.

About the Book:


Big-city free spirit meets small-town cop. And a symphony begins…

A homestay in Oak Hollow is Alexandra Roth’s final excursion before settling in to her big-city career. Officer Luke Walker, her not-so-welcoming host, isn’t sure about the “crunchy” music therapist. Yet his recently orphaned nephew with autism instantly grooves to the beat of Alex’s drum. Together, this trio really strikes a chord. But is love enough to keep Alex from returning to her solo act?

Add In the Key of Family to your Goodreads!

Buy here:


Harlequin.com: https://www.harlequin.com/shop/books/9781335404930_in-the-key-of-family.html
Amazon: https://www.amazon.com/Key-Family-Home-Hollow-Book-ebook/dp/B08NYTLMDF
Barnes & Noble: https://www.barnesandnoble.com/w/in-the-key-of-family-makenna-lee/1138339721
Apple Books: https://books.apple.com/mt/book/in-the-key-of-family/id1541463571
Google Play: https://play.google.com/store/books/details/Makenna_Lee_In_the_Key_of_Family?id=ja0KEAAAQBAJ
Kobo: https://www.kobo.com/ca/en/ebook/in-the-key-of-family

About the Author:


Makenna Lee is an award-winning romance author living in the Texas Hill Country with her real-life hero and their two children. Her oldest son has Down syndrome and taught her to appreciate the little things, and he inspired one of her novels. As a child, she played in the woods, looked for fairies under toadstools, and daydreamed. Her writing journey began when she mentioned all her story ideas, and her husband asked why she wasn’t writing them down. The next day she bought a laptop, started her first book, and knew she’d found her passion. Now, Makenna is often drinking coffee while writing, reading, or plotting a new story. Her wish is to write books that touch your heart, making you feel, think, and dream. She enjoys renaissance festivals, nature photography, studying herbal medicine, and usually listens to Celtic music while writing. She writes for Harlequin and Entangled Publishing and believes everyone deserves a happy ending.

Contact Makenna:


Website: https://makennalee.com/
Facebook: https://www.facebook.com/MakennaLeeAuthor
Twitter: https://twitter.com/MakennaLeeBooks
Instagram: https://www.instagram.com/makennaleewriter/
Goodreads: https://www.goodreads.com/author/show/18822880.Makenna_Lee

Excerpt

Alexandra Roth stumbled back when the Acorn Café door fired open, and a tall cowboy rushed out with a large bag of ice over one shoulder and a twelve-pack of beer under the other. He sidestepped just in time to avoid sending her sprawling onto the hot sidewalk, and his obsidian eyes sprang wide.
“Pardon me, ma’am. So sorry.”
“It’s…okay.” She barely managed to squeak the words out past her surprise and a flare of attraction.
Were all the Oak Hollow residents this polite? And this smoking hot? She adjusted the guitar case over one shoulder, pulled out her cell phone and snapped a photo of him walking away. The historic town square created the perfect backdrop to frame his powerful form. Tight maroon T-shirt over bulging muscles, worn jeans, hat, boots and enough swagger to get a girl’s motor revving. A genuine cowboy in the flesh. Not something she often saw back home in Manhattan.
He paused, and she thought she’d been caught taking his picture, but after a few beats he continued across the street to a black truck. Attempting to look nonchalant, she leaned her large rolling suitcase against a post and sat on top. Her movie-star sunglasses were the perfect concealment for stealthy observation. The cowboy handled his purchases like they weighed nothing, but his flexing muscles told a different story as he put them on the tailgate and leaned in to drag over a cooler. Ice cascaded and chimed like musical notes over the glass bottles.
Alex didn’t want to take her eyes off him long enough to dig out her sketch pad, so she’d have to use her memory and the one photo to paint his image. A hot breeze fluttered her billowy sleeves, and she wished for some of his ice to cool her heated skin. Beer wasn’t her drink of choice, but putting a cold amber bottle to her lips sounded pretty good about now. Maybe she’d run into him again, and they could share a drink, or a meal, or…
The star of her developing fantasy slammed his tailgate. His eyes were hidden in the shade of his cowboy hat, but the wide grin he shot her way was as clear as Waterford Crystal, and she knew she’d been caught staring. Rather than looking away in embarrassment, she returned his smile. He gripped the brim of his hat in a sort of cowboy salute, then climbed into the cab and started the engine. It wasn’t the first time she’d been caught observing someone whose likeness she wished to capture with paint.
Once he’d driven down Main Street, Alex studied the covert photo on her phone, only feeling a smidge guilty about taking it without permission. But you couldn’t see his face, which was unfortunate because it had been a really nice face—all angles and strong lines, tan skin and a bit of dark, sexy stubble. It would be the first watercolor painting she’d work on once she got settled. If she didn’t melt in this oppressive Texas summer heat. She gathered her long mass of auburn hair, twisted it into a messy bun and secured it with two paintbrushes from the front pocket of her guitar case.

The Island by Mary Grand @authormaryg @rararesources

About the Book:


The Island – where everyone knows everyone, and secrets are impossible to keep…
‘Be careful, you don’t know them as well as you think. Remember – anyone can kill.’
Juliet has returned to the Isle of Wight from years abroad to visit her sick father and to be reunited with her three sisters – Cassie, a professional musician who seems to have lost her way in life, Mira, who is profoundly deaf, is married to the local vicar but their relationship is falling apart, and Rosalind, glamorous and charming but now deeply unhappy and secretive about her life. 
As Juliet’s father lies dying, he issues her with a warning. There is a killer on the loose, and they may be closer than she can ever imagine. He anxiously tells Juliet that he confided a family secret in son-in-law Rhys, and now regrets ever saying a word.
Days later, as the clock strikes one in the morning, a man comes out of Rhys’s church, walks along the path and is run down by a car driven by an unidentified person. When the finger of suspicion points to Juliet, she realises the only way to clear her name is to uncover the secrets her family has been keeping from her for years. But with a killer on the loose, danger is getting closer all the time…
The Island  is set on the Isle of Wight – insular,  claustrophobic, and where secrets are hard to keep. Mary Grand’s heart-stopping who-dunnits are perfect for fans of Louise Candlish. Agatha Christie and Lucy Foley.

Where to Buy: https://amzn.to/2OJXBwQ

About the Author:


Mary Grand is the author of five novels and writes gripping, page-turning suspense, with a dark and often murderous underside. She grew up in Wales, was for many years a teacher of deaf children and now lives on the Isle of Wight where her new novel, The House Party, which was published by Boldwood in August 2020, is set.

Contact Mary:


Facebook: https://www.facebook.com/authormarygrand
Twitter: https://twitter.com/authormaryg
Instagram: https://www.instagram.com/maryandpepper/
Newsletter Sign Up Link: https://bit.ly/MaryGrandNewsletter
Bookbub profile: https://www.bookbub.com/authors/mary-grand

My Review:

The Island is my second novel by Mary Grand, the last one was The House Party which I loved. I went into The Island expecting great things, and that’s what I got. Mary Grand is such a brilliant suspenseful thriller author and I was lured into the plot about three sisters: Cassie, Mira and Rosalind who have very different lives.

Juliet has been abroad for years and her father is sick. There’s a killer on the loose, he says.

Then, after a sudden murder for which Juliet is blamed, a hunt for the culprit begins. Could Juliet really kill? Or was it one of her sisters, each of who has problems of her own?

I love how Mary Grand uses the setting of the Isle of Wight as she makes it at once welcoming then sinister and scary. I had shivers running down my spine and was hooked on the plot.

What I enjoyed about the characters was that each sister was very realistically portrayed. Cassie is a musician, Mira is married to the vicar but their marriage is on the rocks.

I was pleased, as a fellow person with disabilities, that Mary Grand has created Mira, who is profoundly deaf. I think there aren’t enough books with characters with disabilities in them and I am an advocate for any book that portrays disability well.. I found my awareness and understanding of living with deafness improved through this book too.

Rosalind is glamorous but unhappy.

The setting, plot and pace of writing combined to make this novel a hit in my opinion, and I can’t wait to review more Mary Grand novels. She is now one of my favourite authors for thrillers.

The Island is utterly compelling. Highly recommended.

Thanks to Mary Grand, Boldwood Books and Rachel’s Random Resources for my ARC in exchange for an honest and voluntary review.

5 stars.

Demystifying Disability: What to Know, What to Say, and How to Be an Ally by Emily Ladau

This book is due for release on 7th September 2021:

About the Book:

An approachable guide to being a thoughtful, informed ally to disabled people, with actionable steps for what to say and do (and what not to do) and how you can help make the world a more accessible, inclusive place.

Disabled people are the world’s largest minority, an estimated 15 percent of the global population. But many of us–disabled and non-disabled alike–don’t know how to act, what to say, or how to be an be an ally to the disability community. Demystifying Disability is a friendly handbook on important disability issues you need to know about, including:

• How to appreciate disability history and identity
• How to recognize and avoid ableism (discrimination toward disabled people)
• How to be mindful of good disability etiquette
• How to appropriately think, talk, and ask about disability
• How to ensure accessibility becomes your standard practice, from everyday communication to planning special events
• How to identify and speak up about disability stereotypes in media.

Authored by celebrated disability rights advocate, speaker, and writer Emily Ladau, this practical, intersectional guide offers all readers a welcoming place to understand disability as part of the human experience.

My Review:

As soon as I found this on NetGalley, I knew I had to request it. I liked the definitions of disability from interviewees and the fact that one of the people is someone I know from an online disability community.

I have Cerebral Palsy, Hydrocephalus and four visual impairments and have so many experiences of different treatment from different people throughout my life.

I have experienced both ignorance and acceptance from people and life has been, and still is, a constant fight for inclusion.

I know so many people with disabilities will identify with me on this.

15% of the world’s population has some type of disability.

I don’t need disability to be demystified for me as I live with my disabilities every day but this is exactly the type of book that I know could help many people who need to know more about the world of disability and what those of us with disabilities are constantly up against.

Demystifying Disability will be good for those who think they “know it all” as they live with, or know, people with a disability. I believe everyone can learn more.

Like Emily Ladau, I am a wheelchair user and I identified with her experiences. I also learnt about her disability.

Another part of this book that I loved was her discussion of visible versus invisible disabilities, since I have both. My glasses and wheelchair are a marker of my visual disabilities, as are my scars from my shunt surgeries for hydrocephalus.

However, unless I let people know I have hydrocephalus, let them know what it is and how it affects me, they have no idea that I have it or how serious it is.

Likewise with my glasses. I have them but people cannot tell how strong my prescription is or that they only allow me to “see” the very little I can and that they don’t correct my visual difficulties, that nothing will. I embrace all these parts of me and encourage those who do not to do so and for others with disabilities to embrace their own uniqueness.

Demystifying Disability is a friendly but firm nudge in the right direction for people who think the world is accepting of people with disabilities.

It will challenge your perception of disability whether you have a disability or not, and I hope it will go a long way in producing more real change in society.

I think, and hope, it is the kind of book that will let people know that they shouldn’t judge people based on what they “think” a person with a certain disability will look, or move, like.

I sincerely wish I could have had access to this book when I was growing up, as I think it will have gone a long way in shaping people’s attitudes.

The message this book gives is that all of us with disabilities should love ourselves as we are and that everyone can learn something, no matter how much they think they know.

Because we can all keep learning.

Thanks to Emily Ladau for my ARC in exchange for an honest and voluntary review.

5 stars.

Pre-order on Amazon here:


A Life Like Anyone Else: How a Man with Intellectual Disability fulfilled his American Dream by Michael S. Long


MICHAEL LONG
STOCKTON, CA
Author of A Life Like Anybody Else: How a Man with an Intellectual Disability Fulfilled His American Dream

About the Book:


Publisher: KiCam Publishing
Pub date: January 2020
Paperback/hardcover: Paperback, 162 Pages
ISBN-13: 978-0999742297
Price: $18.95

A Life Like Anybody Else: How a Man with an Intellectual Disability Fulfilled His American Dream, Michael Long’s story is one of hope and advocacy, in spite of what others may have expected. Michael was born with an intellectual disability and cerebral palsy, and in spite of the trials set before him, went on to achieve exceptional things. A Life Like Anybody Else recounts the events from his childhood to being the first person hired with a developmental disability by the State of California, and his present role in the disabilities awareness movement. Michael’s story is one of inclusion, acceptance and the courage needed to spur proactive change for others.

When Michael was born, the doctors told his parents he may never speak, but he did. As a child in the second grade, a teacher ignorantly referred to his mental state and attempted to demoralize him. These ill-informed comments caused self-esteem issues, and for Michael, the feeling that he was different, or less than others. But in 1986, after a personal development class, everything changed. His confidence grew, and what he had always heard from his own family, he now began to believe. Michael knew he could live a life like no other, which is exactly what he has done.

He founded a self-advocacy movement called People First and set up chapters all across California and abroad to help others. In 1992, Governor Pete Wilson of California hired Michael as a Consumer Coordinator at the Department of Developmental Services, making him the first person to be officially hired by the State of California with an intellectual disability.

A Life Like Anybody Else is a powerful memoir that calls for inclusion, education and acceptance for all. It will inspire readers to achieve their goals, to overcome obstacles, and will highlight misperceptions surrounding people with disabilities.

I enjoy spreading awareness any way I can to help others with disabilities and anybody else who could do with some more awareness of what they go through in life. Thanks to KiCam Projects for providing this list of important dates. In particular, I celebrate October 6 and December 3 but will start celebrating more days from this list.


Men’s Health Month- June
Disability Pride Month -July
Americans with Disabilities Act Anniversary -July 26
National Nonprofit Day-August 17
Disability Awareness Day- September 5
National Disability Employment Awareness Month & Learning Disability Awareness Month- October
World Cerebral Palsy Day- October 6
National Family Caregivers Month- November
World Kindness Day- November 13
International Day of People with Disabilities -December 3


Want to Talk More About the Book?


Michael Long can share how the topic of disability awareness and opportunities for the disabled are approached by society from first-hand knowledge
Expose the need for acceptance and awareness of people with disabilities in our schools’ curriculums
We are living in a world where different isn’t always seen as good. Michael brings a unique perspective to this discussion.


5 Ways an inclusive society is better for everyone


The importance of social awareness and advocacy groups, what it means to the disabled community and the community at-large
Michael Long is an author, advocate and inspirational speaker, who hopes to focus his life’s work on awareness and inclusion of people with disabilities within the educational sector. Michael’s story is the American Dream, and one of acceptance, triumph and advocacy. He now looks to inspire and motivate others with this message.

Advance Praise for the Book:


“A book told in the voice of an individual with disabilities is a rarity. This book — so rich and full, so vivid and moving, so free of cliché, so bursting with hope — is a marvel.” — Rachel Simon, New York Times bestselling author of Riding the Bus with My Sister and The Story of Beautiful Girl

“Wonderful … Informative and inspirational … A different perspective.” — Barbara E. Bromley, Ph.D., California State Polytechnic University, Pomona

“Michael Long tells the truth in this book. And the truth about what it means to be a human being is hard to come by.” — Nancy R. Thaler, Deputy Secretary for the Office of Developmental Programs, Commonwealth of Pennsylvania

“Every page is full of breathtaking honesty, hard-won insights, love for others so deep you feel it in your own bones, clarity about the rights of people with disabilities, and enthusiasm for all life has to offer, from education to employment to civic involvement to romance to living the American Dream. His journey from child to man is populated by many naysayers who put him down and tell him what he cannot do, but also caring parents, good friends, and one teacher who made a huge difference. As I read on, watching Michael come to believe in himself, move into an independent life, and strive to make his mark on the world, my emotions rose and fell and rose again — until he became a prominent and influential self-advocate and public speaker, and then, my heart soared.” — Rachel Simon, New York Times bestselling author of Riding the Bus with My Sister and The Story of Beautiful Girl

“Michael has made presentations in my Mainstreaming and Special Education classes for a number of years. I cannot praise Michael’s contributions enough…He is an example of the results for which we all strive.” — Patricia M. Phipps, Ph.D., Professor / Special Education, California State University, Chico

“Michael Long has been a visionary pioneer forging dreams of a future where people with disabilities are living, working, learning, and playing in communities that recognize the value of all people. He is an outspoken, courageous leader and ‘hero’ in the self-advocacy movement. … I have personally witnessed the transformation in others when they have been ‘touched’ by Michael — he is a unique and generous human being.” — Laura Larson, Executive Director, State Council of California Developmental Disabilities Board

My Review:

As a person with Cerebral Palsy and Hydrocephalus as well as visual impairments, I am always searching for books by, or about people living with the same disabilities as me or other medical conditions because there weren’t many books of this type when I was growing up (or at least none that resonated with me because of my age group). That was, until I reached adulthood.

Michael Long tells the story of his life from what he was told about his birth to his experiences in education to life in general. Although the cause of our Cerebral Palsy is different, I always feel an immediate affinity with others with it and want to know their story.

I am not American and have never been to California before (although I would love to go).

Through this memoir I felt I got an idea of Michael’s life, from where he lived to his family dynamics.

I was utterly immersed from the beginning to the end in all aspects of Michael’s life.

I too have done some things to spread awareness of my disabilities but I have only taken part in one awareness weekend. I also use social media and my blog to spread awareness.

I would love to take part in more events, because during that weekend I met amazing people with similar experiences and it was no longer a feeling of “us or them” mentality that I experienced with a lot of people.

I, like Michael, have found out just by living life in my own unique way that self advocacy is key to getting where you want in life or as close to it as possible.

The structure of the book is easy to follow and focuses on the important aspects of life and the kinds of things people want to know about someone (family, school and other parts of their life).

Michael has a unique way of telling his story and the book is full of anecdotes and experiences. It is so informative yet relaxing and by the end I felt I “knew” Michael although we have never met.

The novel is a nice length and flows so well that is is just a joy to have on my Kindle. I have many memoirs by people with disabilities that are different to mine, but so far only two by people with CP and I identify with the memoirs by people with CP more since it is a condition I live with.

I congratulate Michael hugely on being part of the self advocacy movement and for this unforgettable memoir.

I think people with Cerebral Palsy, or another disability or people without any type of disability will learn so many life lessons from this book. It is one that I highly recommend, not just as a fellow person with CP but as a memoir in general because it made such an impression on me.

Thanks to Michael S. Long and Karl Williams for my ARC in exchange for an honest and voluntary review.

5 stars.

Patience by Victoria Scott @AuthorVScott @Aria_Fiction

About the Book:

If you were offered a chance to cure your child’s disease, would you take it? The Willow family have been through a lot together. Louise has devoted her life to her family and raising her disabled daughter, Patience. Pete now works abroad, determined to provide more, even if it means seeing less of those he loves. And Eliza, in the shadow of her sister, has a ‘perfect’ life in London, striving to live up to her mother’s high standards.
Meanwhile, Patience lives her life quietly, watching and judging the world while she’s trapped in her own body. She laughs, she cries, she knows what she wants, but she can’t ever communicate this to those who make the decisions for her. Patience only wants a voice, but this is impossible.

When the opportunity to put Patience into a new gene therapy trial to cure her Rett syndrome becomes available, opinions are divided. The stakes are high, and the Willow family face an almost impossible dilemma.
And what is a ‘normal life,’ anyway? Is Patience about to find out…?

About the Author:

Victoria Scott has been a journalist for almost two decades, working for a wide variety of outlets including the BBC, Al Jazeera, Time Out, Doha News and the and the Telegraph. Alongside her love of telling real-life stories, she has also always written fiction, penning plays, stories and poems ever since she first worked out how to use her parents’ electric typewriter.

Victoria is a Faber Academy graduate. She has a degree in English from King’s College, London and a Postgraduate Diploma in Broadcast Journalism from City University, London. She lives near London with her husband and two children, and works as a freelance journalist, media trainer and journalism tutor.

My Review:

Patience is many things: a HUGE fan of Take That, a person with long blonde hair that many people envy. She’s direct, funny observant and a sister and daughter.

Patience also has Rett Syndrome. She is dependent on carers and family in every aspect of her life. Unable to communicate verbally, she gets her feelings, wants and needs across.

Patience by Victoria Scott goes deep into the lives of Patience and her family and carers. She lives in a residential care home with others with disabilities.

As a person with Cerebral Palsy and Hydrocephalus who, like Patience, requires care and support in every aspect of my life, I was immediately able to identify with her. I cannot give an opinion on life in a care home, but can about the difficulties and challenges with finding care, support and services that meet my needs.

I identified with, and was glad that, author Victoria Scott included people with a variety of disabilities (Cerebral Palsy included) in the plot as this had me saying “yes, that’s me!” and the succinct description was spot-on with the specific needs it mentioned.

Patience’s parents are fighters, and there’s a very real conflict between them about her needs and their ability to provide the best they can for her. She is at the forefront of their lives, as is her sister Eliza.

There’s no jealousy or conflict between the sisters though, and they have a very good relationship which is tender and beautiful. One moment in particular is very raw when Eliza goes to Patience late at night.

Eliza has her own struggles, with life and love so it was great to see her “slice of life” too.

Their dad, Pete, was largely absent through work as he works in Qatar for the higher salary and his journey to get any type of job, even in construction, to help his family is really humbling. I longed for the moments when he came back. Even in absence, he’s thinking of his family.

There are some real conflicts though between him and his wife due to the circumstances of their life.

What would you do if you had the chance to work with the doctor who wanted to do a medical trial that could improve the lives of many children and adults with Rett Syndrome? Patience’s mum jumps at the chance but this creates conflict with her husband.

Her determination is heartwarming in a heartbreaking yet hopeful situation. Their pre-diagnosis journey was breathtaking and really made me stop and think. The place that had in the story was perfectly thought out.

There are parts that made me smile and others that made me identify so much with Patience’s life. The mix of frustration, worry happiness and big dreams.

Patience is a heartwarming, raw emotional amazing portrait of a life some families could not have imagined, but that they embrace.

Patience and her family are people I just wanted to hug and who I would love to actually meet.

I have not come across many novels about life with disabilities, and they are something I have felt sorely lacking in the book market since I was young.

Patience is a real unforgettable treasure of a novel and I loved every page. Those who don’t have insight into what it is to have complex needs and use a wheelchair like Patience and like me and so many others with disabilities soon will after finishing this.

I already knew about Rett Syndrome before I found this book but I found myself on YouTube wanting to know more. It’s a very current novel as the medical trials are a real thing and that made it even more powerful for me.

Thanks to Victoria Scott and Aria for my ARC in exchange for an honest and voluntary review.

5 sparkling stars.

One of, if not my favourite books of the year. I congratulate Victoria Scott hugely for writing a novel that is so immersive and real about disability and the fears, hopes and struggles that those of us who have severe disabilities face. I hope it goes a long way in the never-ending fight to change societal attitudes.

Patience is a novel everyone should read. It’s raw and emotional, but also an enlightening pick-me-up.

If you, or someone you know has disabilities and has ever felt alone, you are not with this book.

It’s like a huge comforting hug that says “welcome to my world and I understand you.”

I would LOVE this to be made into a film, I think it would be amazing. The book has also left me rooting for the trials for Rett Syndrome, but it also brings home the importance of accepting people just as they are.

There are so many life lessons in this novel, and I felt as if I were living the family’s experience.

If I could recommend a novel to the people who made my life difficult as they did not understand what I live through, Patience would definitely be it. Even though I don’t have Rett Syndrome, my challenges are similar to Patience’s in terms of mobility and care.

The novel makes me feel extra happy for what I can do, even thought it’s in a different way to others.

I think it will spark debate about care facilities and the role of family in care as well as shedding light on what people really live through.

Patience is not one to be pitied and I will never forget the day I discovered her and this book.


Buy the book here:

https://www.amazon.co.uk/Patience-Victoria-Scott-ebook/dp/B08LP5QDY3/ref=sr_1_12?dchild=1&keywords=Patience&qid=1619361502&s=books&sr=1-12

Silence is a Sense by Layla AlAmmar #silenceisasense @algonquinbooks @Laylaalammar_author @AlgonquinBooks and @Layla_AlAmmar

Advanced Praise for Silence is a Sense

MOST ANTICIPATED LISTS:

The Millions: “Most Anticipated: The Great First-Half 2021 Book Preview”
Electric Lit: “43 Books by Women of Color to Read in 2021”
Palm Beach Daily News: “Enter the New Year With These Books On Your List”

PRAISE:

“A fierce novel. The prose is ferocious, the pace is ferocious and the beguiling central character, known as The Voiceless, conceals behind her inability—or reluctance—to speak, a striking, visceral intensity. Layla AlAmmar has skillfully woven a narrative of memory and grief with an illuminating social critique of the position of asylum seekers within contemporary British society. It is daring and devastating.”
—Fiona Mozley, Booker-finalist author of Elmet and Hot Stew

“Kuwaiti writer AlAmmar explores trauma and voicelessness through fragmented narrative form and a mute protagonist who has survived the war in Syria and is now living in isolation in the UK.”
—The Millions

“With a powerful prose, AlAmmar pens a story about a young woman traumatized into muteness after a dangerous trip from war-torn Syria to the UK.”
— Palm Beach Daily News

“Evocative… The conflicts over immigration and racism are brilliantly distilled, and they dovetail seamlessly with the narrator’s lyrical, increasingly defiant narration. Patient readers will find much to ponder.”
—Publishers Weekly

“Silence is a Sense opens the door on lives we need to hear more about. Lyrical, moving, revealing, it made me understand better the very human need for safety and contact.”
—Tracy Chevalier, bestselling author of Girl with a Pearl Earring and A Single Thread

UK PRAISE FOR THE PACT WE MADE:

“[A] fascinating glimpse into the complex and contradictory life of a modern Kuwaiti woman… full of personality and touches of humour.”
—Guardian

“[A] fascinating debut … nuanced and understanding.”
—Observer

“Set in contemporary Kuwait, AlAmmar asks us to reimagine the lives of modern Muslims as they struggle to reconcile the freedom of choice with the customs of their faith.”
—BBC Radio 3 Free Thinking

“So beautifully written and so important, and so cleverly crafted, it can’t be a debut. But it is.”
—Joanna Cannon

“A Kuwaiti #MeToo novel of muffled suffering and a bid for freedom—absorbing, brave and compelling.”
—Leila Aboulela

“Truthful and courageous, radical and lyrical. I loved it.”
—Hanan Al-Shaykh

“Brilliant book about the pressures of being a 30 year old unmarried woman in Kuwait—the struggle for modernity amidst patriarchal tradition—and the cultural failure to acknowledge trauma. What a debut.”
—Pandora Sykes

“The Pact We Made deals with one woman’s search for independence.”
—ELLE

Named a 2021 Most Anticipated Book by:
The Millions: “Most Anticipated: The Great First-Half 2021 Book Preview”
Electric Lit: “43 Books by Women of Color to Read in 2021”
Palm Beach Daily News: “Enter the New Year with These Books on Your List”

Praised as “full of personality and touches of humour” by The Guardian and as “fascinating… nuanced and understanding” by The Observer, Layla AlAmmar’s 2019 The Pact We Made debuted in the UK to tremendous coverage, hailed as a Kuwaiti #MeToo novel that “asks us to reimagine the lives of modern Muslims as they struggle to reconcile the freedom of choice with the customs of their faith” (BBC Radio 3). Now, Algonquin is thrilled to introduce AlAmmar to American audiences with her first novel in the U.S., SILENCE IS A SENSE (Publication Date: March 16, 2021; Hardcover; $25.95). Profound and life-affirming, this novel follows a mute Syrian refugee grappling with her experiences during the Syrian Civil War and as a refugee traveling through Europe as she is gradually and unwillingly drawn into the lives of her neighbors. “SILENCE IS A SENSE opens the door on lives we need to hear more about,” says Tracy Chevalier, bestselling author of Girl with a Pearl Earring and A Single Thread. “Lyrical, moving, and revealing, it made me understand better the very human need for safety and contact.”

About the Book:

Named a 2021 Most Anticipated Book by:
The Millions: “Most Anticipated: The Great First-Half 2021 Book Preview”
Electric Lit: “43 Books by Women of Color to Read in 2021”
Palm Beach Daily News: “Enter the New Year with These Books on Your List”

Praised as “full of personality and touches of humour” by The Guardian and as “fascinating… nuanced and understanding” by The Observer, Layla AlAmmar’s 2019 The Pact We Made debuted in the UK to tremendous coverage, hailed as a Kuwaiti #MeToo novel that “asks us to reimagine the lives of modern Muslims as they struggle to reconcile the freedom of choice with the customs of their faith” (BBC Radio 3). Now, Algonquin is thrilled to introduce AlAmmar to American audiences with her first novel in the U.S., SILENCE IS A SENSE (Publication Date: March 16, 2021; Hardcover; $25.95). Profound and life-affirming, this novel follows a mute Syrian refugee grappling with her experiences during the Syrian Civil War and as a refugee traveling through Europe as she is gradually and unwillingly drawn into the lives of her neighbors. “SILENCE IS A SENSE opens the door on lives we need to hear more about,” says Tracy Chevalier, bestselling author of Girl with a Pearl Earring and A Single Thread. “Lyrical, moving, and revealing, it made me understand better the very human need for safety and contact.”

A young woman sits in her apartment in an unnamed English city, absorbed in watching the small dramas of her neighbors through their windows across the way. Traumatized into muteness after a long, devastating trip from war-torn Syria to the UK, she feels herself sinking deeper into isolation, moving between dreams, reality, and memories of her absent boyfriend, her family, and her homeland. At the same time, she begins writing for a magazine under the pseudonym “the Voiceless,” trying to explain the refugee experience without sensationalizing it—or revealing anything about herself. Gradually the boundaries of her world expand as she ventures to the corner store, to a gathering at a nearby mosque, and to the bookstore and laundromat. When an anti-Muslim hate crime rattles the neighborhood, she has to make a choice: Will she remain a voiceless observer, or become an active participant in a community that, despite her best efforts, is quickly becoming her own?

A brilliant, poetic meditation on identity, memory and the speakability of trauma, SILENCE IS A SENSE explores what it means to be a refugee and to need asylum, and how fundamental human connection is to our survival.

My Review:

The first thing I thought was that the title of this novel, Silence is a Sense, is very mysterious and I was really wanting to get into it.

I was amazed at the pull that the plot had on me from the beginning and found that I was really keen to know the neighbours who lived with the Syrian girl who was for most of the book nameless but who we saw had many struggles to integrate into society as she had just arrived in the UK after an odyssey-like journey which traumatised her but also because her situation was complicated by selective mutism.

I was really drawn into her life and the life of the neighbours in the building that she lived in. The attention to detail in this book is outstanding and I loved every page. I really enjoyed the pace of the book and felt like I was part of the story. It opened my eyes to what refugees experience to get a “better life.”

The book is raw, emotional real and gripping with plenty of tense moments as I never knew how the neighbours would react to Rana and I was constantly hoping that she would find some way to integrate into her surroundings. The mystery of how she would do that is brilliantly portrayed and the atmosphere around that is very well imagined and created. Overall, Silence is a Sense is an incredibly atmospheric book.

Thanks to Layla AlAmaar and Algonquin books for my ARC in exchange for a voluntary and honest review.

5 stars.

About the Author:

Born in the US and raised in Kuwait, Layla AlAmmar has written for The Guardian and ArabLit Quarterly, with short stories published in the Evening Standard, Quail Bell Magazine, the Red Letters St. Andrews Prose Journal, and Aesthetica Magazine, where her story “The Lagoon” was a finalist for the 2014 Creative Writing Award.  She is currently pursuing a PhD on the intersection of Arab women’s fiction and literary trauma theory.

She was the 2018 British Council international writer in residence at the Small Wonder Short Story Festival. Her debut novel, The Pact We Made, was published in 2019. ShHaving watched the Arab Spring unfold in early 2011 with a disquieting mix of hope and trepidation, she explains, “It seemed this revolution transcended the touchstones of conflict we’re used to—religion and sect, tribe and origin, liberal and conservative. It felt like a call for an uncompromising dignity that extended to all areas of life. And yet: what comes after the revolution? The question left me unnerved, confused, and almost unbearably sad. So I did what I always do: I put it to a story. Not to try and make sense of things—for there is, I think, no way of making sense of the horror humans are capable of inflicting on one another—but because I needed a repository for the thoughts and feelings that assailed me.”