Disability Experiences: Disability Specific
TweetDisability Experiences: Disability Specific offers personal experience writings and resources on specific disabilities for children and adults with disabilities, their families and caregivers. This provides a place for you to express information about yourself, your experiences, stories, poetry, art, music, dance, advice or other creative writing. This collection of writings and websites have been submitted by our community or link to websites that share the personal disability experiences of people with disabilities.
Simply look up your disability we will offer you the latest guides and articles on that disability. Also, if you wish to submit your own writing or website, please click on our Share Your Knowledge or Share Your Personal Experiences Form.
Disclaimer: New Horizons Un-limited is not endorsing and assumes no responsibility in guaranteeing the products, services, programs or conditions as described. If you are interested in a resource listed below, call or contact the resource to verify the current situation. Evaluate the information, analyze your unique circumstances, use your best judgment and make your own decisions when using the information. Before making any change, consult your health care professional.
Disability Experiences: Alzheimer's Disease
New Horizons Un-Limited Community Sharing Your Alzheimer's Personal Experiences
Alzheimer's from a Caregiver's Perspective: 10 Tips for Caregivers
[Published by New Horizons Un-Limited, March 31, 2009]
Alzheimer's from a caregivers perspective submitted to NHU from Marvin, a caregiver whose wife has been experiencing Alzheimer's Disease for several years.
Alzheimer's Personal Experiences Resource Links
Dealing with Alzheimer's - my personal Experiences This article is a diary of experiences of a grandmother and the granddaughter's telling. The early stage of Alzheimer's disease is just like other forms of dementia and very similar to normal forgetfulness which accompanies growing older. This story takes you through all the stages and there are many commentaries at the end of other's experiences.
Disability Experiences: Amputation/Limb Differences
New Horizons Un-Limited Community Sharing Your Amputation/Limb Differences Personal Experiences
Why Me? Why AEP? Carrie describes her coping strategies growing up with limb loss in a very inspirational message and shares an e-community with NHU community.
Amputation/Limb Differences Personal Experiences Resource Links
Lilly Walters' About One Hand Typing offers this site providing information on the options available for one-hand typists, Lilly Walters, who is a one-hand typist and an author of two books on the topic, offers some motivational success stories, and available products
Amputee Coalition: Inspirational Stories offers stories from people of all ages and all walks of life who have lost their limbs, sometimes multiple limbs and how they cope, how their families cope and how they have moved on to live their lives.
Life Beyond 4 Limbs.com is written by Darryl Partridge whose mission of hope is that through telling his story others will find information, support and motivation to rebuild their life after a catastrophic injury. This site offers more than his personal experience, such as how to embrace life now with disability, a Guide to Amputation, Crutches Tips and Tricks, and 8 Steps to Accepting Your Disability, along with a Blog and Inspiration.
Survivor Stories (search Survivor stories in the search box) from the Marshall Legacy Institute provides stories from people who lost limbs from land mines and survived. The MLI's Survivor's Assistance Program has helped hundreds of landmine survivors and their families with the assistance they need to move forward. To read the stories, visit this website. For more information, contact them at 2425 Wilson Blvd, Suite 240 Arlington, Virginia 22201, Phone: 703-243-9200 | Fax: 703-243-9701 | or send email to: info@marshall-legacy.org
Disability Experiences: Aphasia
Aphasia Personal Experiences Resource Links
Aphasia Hope Foundation: Share your Experiences with others through Aphasia Hope regarding different therapies, what worked, what didn't work, exercises that can be done at home ... Read the experience of one caregiver after 18 years of her husband's stroke and recovery.
National Aphasia Association: My Story is a place where YOU can share YOUR struggles, triumphs and hopes with this often frustrating and misunderstood disorder. Read personal stories and educate others about Aphasia.
Struck Dumb is a collaboratively written play based on the firsthand experience of stroke by one of the authors, Joe Chaikin. Chaikin, when about 50 years old, suffered a stroke during an operation for a faulty heart valve, which left him aphasic. Information about the play is located on the NYU langone Health website.
Disability Experiences: Autism Spectrum Disorder/Neurodiversity
Autism Spectrum Disorder/Neurodiversity Personal Experiences Resource Links
Asperger.net is the web home of Stephen Shore, author of Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome. AutismAsperger.net serves to build greater awareness of the autism spectrum and in particular, Asperger Syndrome. It joins other websites with this same focus and will work together with them toward strengthening our community of people on the autism spectrum. Autismasperger.net will help people appreciate those on the autism spectrum for who they are and participate with them to develop strengths and make accommodations for challenges.
Donna Williams website is the web site for Donna Williams, an author of several books and an adult with Autism.
Disability Experiences: Cerebral Palsy
New Horizons Un-Limited Community Sharing Your Cerebral Palsy Personal Experiences
Living with Involuntary Movement from New Horizons Un-Limited: Disability Experiences: Conversations on Disability is a writing on personal experiences with involuntary movement from a conversation with a mother of adult children with disabilities.
Cerebral Palsy Personal Experiences Resource Links
Cerebral Palsy Guidance Alex has sent us a link to his website, a comprehensive informational website on Cerebral Palsy (CP) with a mission of providing quality cerebral palsy information and assistance to families in need. This site provides information on Cerebral Palsy symptoms and treatments to financial assistance including daily living articles, covering all aspects of cerebral palsy and all of the information is thoroughly researched and cited. Their writing staff includes, Alex, who's lived with cerebral palsy since infancy. His personal experiences of life with Cerebral Palsy makes this website more insightful and places the importance on how critical it is for parents of a child with CP to have access to reliable and comprehensive information on this complex condition. We encourage you to visit the Blog at Cerebral Palsy Guidance and the 15 installments Alex has contributed on Growing Up with Cerebral Palsy
Disability Experiences: Hearing Impairment
Hearing Impairment Personal Experiences Resource Links
Linda's Helps for the Hard of Hearing and Cochlear Implant Page is a personal page for a woman who is hard of hearing and who has had a cochlear implant. Linda gives a diary of her experiences and offers "Helpful Hints for Communicating with the Hard of Hearing," and resources on late deafness, aural rehabilition (as compared to learning sign), assistive technology for the hearing impaired, and cochlear implants.
Belgium
Hearing You Personal Experiences is non-profit organization for people with hearing impairment and their website is available in English, Spanish, German and French. Their mission "is to collect, process and circulate all and any up-to-date scientific (sociological, legal, medical, public, policy related) and other relevant information including personal stories pertaining to hearing impairments and their human and socio-economic consequences." For more information contact Hear-it AISBL, Avenue Tervuren 35, B-1040 Brussels, Belgium, Phone: +32 477 53 25 89 or send e-mail to: hearingyou@ehima.com.
Disability Experiences: Learning Disabilities
Learning Disabilities Personal Experiences Resource Links
First Person - Advice About Being an LD Student by Caitlin Callahan This personal experience is an article on LD Online and is by a young person who tells of her experiences and solutions to problems experienced as a student.
First Person -
Robert Rauschenberg
by Robert Rauschenberg. This personal experience is on the website LD Online and is by the artist, Robert Rauschenberg, whose works are
included in major museums all over the world and every important international collection of contemporary art. Rauschenberg had dyslexia, a reading disability that made school very difficult for him. He tells of his education, his life and his work. Rauschenberg died in 2008, but his foundation works on to assist others with dyslexia and other interests of the artist such as medical research, education, the environment, the homeless, world hunger and global enhancement of the arts.
Disability Experiences: Multiple Sclerosis
New Horizons Un-Limited Community Sharing Your Multiple Sclerosis Personal Experiences
Focus on "ABLE" within Disability
written by Diane Gillan, Copyright 2021.
When disclosing that I'm disabled with having Multiple Sclerosis, I've tried to concentrate on the word "ABLE" within the term "disability." I haven't had enough energy to continue working full-time since 2005, but I'm quite "ABLE" to work part-time as a professional writer/public relations specialist who is determined to keep challenging myself while trying to...
Continue Reading
Disability Experiences: Physical Disabilities
New Horizons Un-Limited Community Sharing Your Personal Experiences with Physical Disabilities
"Depression - You Can Feel Better!" is the beginning chapter to Don't Make Depression Your Disability, written by Bobbie Ratcliff. Bobbie has given us a way to look at life that can turn our lives around for the better. Having sustained an injury and subsequent, illness, pain and disability, Bobbie has experienced first hand the extreme down side of disability. Bobbie and Anne, his wife of 24 years, have made their journey together which has brought them to this place and time. Now he has shared their remarkable, yet simple, everyday solutions, their "Cookbook for a Healthy Emotional Diet." With humor and humanity, he persuades us to make the most of life with his self-enlightened ideas to cope with illness and disability. Check back here at New Horizons Un-Limited soon for more chapters of his exciting article! --------© Copyright, 2006, Bobbie Ratcliff, All Rights Reserved. Published by New Horizons Un-Limited.
December 1, 2006
Living with Involuntary Movement published by New Horizons Un-Limited, included under Disability Experiences: Conversations on Disability, this article is a writing on personal experiences with involuntary movement from a conversation with a mother of adult children with disabilities.
June 26, 2000
Physical Disabilities Personal Experiences Resource Links
Glen's Homepage
for
Disabled Veterans Benefits is a site written by a disabled vet and his personal experience with disability and appealing to claim disabled veteran benefits. He provides many resource links for disabled veterans.
Disability Experiences: Spinal Muscular Atrophy
New Horizons Un-Limited Community Sharing Your Personal Experiences with Spinal Muscular Atrophy
From Secret Entrances to Plywood Ramps: Navigating Your Social Life with a DisabilitySeptember 15, 2016
Your twenties are supposed to be the time where you branch out, meet new people, and experience new things for the first time. If you're in college, 'welcome week' brings about many activities, and every weekend there's something going on. If you are not in school, you and your friends are all trying to balance... Continue reading
Spinal Muscular Atrophy Personal Experiences Resource Links
Our SMA Angels provides stories of personal experiences of warriors of the genetic disorder, Spinal Muscular Atrophy, many ages, strengths, faces, choices, lives, and stories-but ALL are angels. You will find the websites of more than a hundred children affected by this disease These are some of the bravest and most amazing children and families you will EVER have the privilege to meet.
Cole's Quilts, Creations of Love Etc. is a project to provide cross stitch Quilts of Love to children with Spinal Muscular Atrophy. Begun with the personal story of Cole Daniel Webb the project has given many quilts through many quilters. Check out their donor board at www.123stitch.com. To find out how you can contribute a quilt square, visit the website above or email colesquilts@hotmail.com.
Disability Experiences: Vestibular Disorders
New Horizons Un-Limited Community Sharing Your Personal Experiences with Vestibular Disorders
Dizziness and Me is an article written by Phil from Washington and submitted to New Horizons Un-Limited in which he has shared his personal, 33 year experience with a vestibular disorder, an inner ear disorder that causes severe dizziness and nausea. Phil's experience with misdiagnoses and dizziness are unfortunately common with inner ear diseases. Through Phil's experience, we can all begin to understand the complications brought to daily living with vestibular disorders. Thank you to Phil for sharing his experiences and these helpful suggestions on what people with vestibular disorders need from their health professionals and rehabilitation.
Europe
Philippa's Story: Living with Superior Semicircular Canal Dehiscence Syndrome from Eurodis.org - Rare Diseases Europe "Philippa has superior semicircular canal dehiscence syndrome (SCDS), a rare balance disorder. SCDS is a developmental anomaly that occurs during the first three years of life and is thought to be caused by a lack of bone growth in the uppermost balance canal of the inner ear, which can cause a tiny hole to develop. ... Sound or pressure can trigger abnormal activation of the balance canals in the ear, which in turn leads to a wide range of distressing and disabling symptoms." The very difficult reality for many people with vestibular syndromes is that doctors misdiagnose or miss them. Read more of Philippa's story to find solutions and rehabilitate from surgery from SCDS and all its disabling effects at the link above. Philippa's story adds that this is not as rare as once thought but, "It has been estimated that 10% of chronic dizzy patients could have SCDS, but many of these cases are possibly being overlooked."
Country Listings
United Kingdom
Labyrinthitis.org.uk is a website developed by two ladies in the United Kingdom who suffer from what they call "uncompensated labyrinthitis". They have developed this website to provide information and support for other people who are experiencing ongoing vestibular disorders. As they say on their home page, the site is written by patients for patients. It is a very good website to help people suffering from inner ear dizziness to learn that they are not alone in their suffering, in being misunderstood by their family and friends, and in having difficulty finding a physician that can tell them what is really wrong. This website includes information about how the inner ear and balance systems work, a list of some of the symptoms a person might experience, the process of getting a diagnosis and some of the tests that might be used, information about VRT (vestibular rehabilitation therapy), and a very good section on coping with the disease and the misunderstanding of family and friends. This website includes stories of their experiences with dizziness written by the two women who developed this website. The stories show that finding help and making progress overcoming inner ear disorders is slow but there is hope. The website also has links to websites with information about vestibular disorders and support groups and a list of three books about living with vestibular disorders. For more information, send e-mail to iliaandemma@hotmail.com
Disability Experiences: Visual Disabilities
Visual Disabilities Personal Experiences Resource Links
Experiences of a Blind Computer Scientist is written by Sangyun Hahn, Ph.D. Candidate and is an article on the University of Washington Computer Science and Engineering website. He tells his story about his personal experience in being a blind student in Korea.
Justin Bishop's: Ditch Your Vision From BoardWorld - Justin Bishop may have lost his vision, but his love of skateboarding is stronger than ever. Justin's skill level is also extremely impressive, handling all sorts of ditches, tight bowls, and street spots with style and finesse. This one is bound to stoke you out. Thanks, Justin.
-