CMT and Me: an intimate 75-year journey of love, loss and refusal to surrender to a disabling disease is finished and up on Amazon.com as of Dec. 23, 2018. The book is also available for Kindle and KOBO readers, on iBooks, Barnes and Noble and a host of other ebook distributors. The paperback book has more than 200 photographs in it and it is 330 pages long. Those pages include a list of symptoms CMT symptoms, centers of excellence and support groups around the world. The book has about one third of the photographs but the text is identical. It is taken me 2 1/2 years to write this book and in the writing, I found my family again and revisited the forces that have kept me ticking in spite of this disease that has taken away my ability to walk and, now, the use of my hands. The book is also for all women who love and lose and learn to love again.
Blogging is also something I enjoy and I keep my CMT and Me blog at LindaCrabtree.WordPress.com. And, for the last 20 years I've written a newspaper column, Access Niagara, that now appears monthly in the St. Catharines Standard, the Niagara Falls Review and the Welland Tribune. It also appears online under Opinions on the St. Catharines Standard website. I am also on facebook under Linda Crabtree and Access Niagara although I rarely update the latter.
For travellers with disabilities wanting to visit the Niagara and Niagara Falls Area of Ontario Canada I also keep the website AccessibleNiagara.com. You can find out more about that on the Accessible Travel section of this website.
WRITING AND SPEAKING ABOUT PEOPLE WITH DISABILITIES
Linda here: The item below is taken directly from the publication Word Choices: A lexicon of preferred terms for disability issues published by the Ministry of Citizenship in 1993 with one or two small additions by me. Its message is just as good today as it was then and it can help you write more effectively about people with disabilities and disease. I know writing "people with disabilities" instead of "the disabled" takes a tiny bit longer but it puts people first and that's the name of the game. If you think people first, you can't go wrong.
"As media professionals, you influence and reinforce the public's perception of people with disabilities. The words you use and images you present can create either a positive view of people with disabilities or an indifferent, negative depiction.
This lexicon of words and phrases will help you choose language that is neither demeaning nor hurtful. it was developed by the Ontario Office for Disability Issues and representatives from consumer and other organizations working with persons with disabilities.
Comments were sought from more than 100 organizations in Ontario. Although opinions may differ on some terms, the lexicon presents the consensus among those who were consulted.
Four words to be avoided that make people with disabilities cringe when read: Afflicted, Suffer or sufferer, Victim
Instead of: autistics or "the autistics" please us person with autism or has autism
Instead of birth defect please use congenital disability, blind from birth, deaf from birth
Instead of blind ... A person with no vision or with almost no vision is blind. People with some sight are partially sighted, visually impaired or have low vision, not partially blind.
Instead of brain-damaged please use brain-injured
Instead of confined to a wheelchair, wheelchair bound please use person who uses a wheelchair (A wheelchair provides mobility for persons who cannot walk. It is not confining.)
Instead of crazy, insane please use mentally ill
Instead of crippled please use disabled or be more specific, walks with crutches or leg braces or uses a mobility aid.
Instead of deaf and dumb or deaf mute please use deaf (person with profound hearing loss who communicates by sign language) deafened (deaf late in life) culturally deaf (exposed to sigh language since birth or early in life)
Instead of epileptic please use person with epilepsy
Instead of fits or spells please use seizures
Instead of handicap please use person with a disability or rather than he's handicapped - use he has a disability. Instead of hearing impaired please use hard of hearing (person with any degree of hearing loss who communicates primarily by speech)
Instead of lupus sufferer please use person with lupus
Instead of mongolism please use Down's syndrome
Instead of MS person please use person who has multiple sclerosis
Instead of normal ...Normal is not to be used as opposite to disabled. Say disabled and nondisabled and able-bodied, or use more specific terms such as sighted, ambulatory.
Patient only please in a medical context or referring to a relationship with a medical practitioner please use, people with disabilities or whatever they have. A person with a disability is not automatically a patient.
Instead of physically challenged please use physically disabled
Instead of mentally retarded please use persons with developmental disabilities, developmentally disabled
Instead of stutterer please use person with a speech impairment
Instead of The disabled please use persons with disabilities. Disabled people do not want to be categorized as "the disabled".
Instead of The blind please use persons who are blind
Instead of The deaf please use persons who are deaf
Instead of The deaf-blind please use deaf-blind persons (people who have varying combinations of visual and auditory impairments).