Visual Impairment: Retinitis Pigmentosa
Welcome to our site on Retinitis Pigmentosa (RP) and Visual Impairment (VI). Those of us who participated in the creation of this site have a vested interest in ensuring that those who are affected by an RP or other VI diagnoses have a place to find support resources, jobs in the field for those who wish to work with people with VI as well as jobs available for people with VI, personal testimonies, and current and relevant research. We hope you’ll take the time to peruse the materials posted and share with those around you who might teach children, have colleagues, be related to or themselves have visual impairments.
Our Motivation for Sharing: Our Connection to RP and VI
I teach a course on campus called Individuals with Disability in Society (SPED/PSYCH 345). One of the topics is visual impairment and I start the unit by talking about my aunt who was diagnosed with RP when she was in her 30s. As detailed beautifully in the performance piece in Arts Under the Stars, she slowly lost her vision and was blind by the time she was 40. I remember her anger and frustration with the diagnosis and progression of the disease. She refused to use a probing cane or service dog that we knew would allow her to navigate her environment for the longest time and the frustration was palpable.
Fast forward a decade. My aunt accepted that life had not ended with the loss of her sight; in fact, it had just begun. She began to take classes to regain her independence, to meet others who were blind and learn from their experiences and to live alone, on her terms. With the skills gained, she learned how to make her own clothes, apply her own make-up, cook for herself and navigate her community. She eventually became a motivational speaker to help encourage others to embrace who they are for their strengths and talents which are known and those which are yet to be discovered.
My aunt motivates me to share her story with my students and the community at large. I hope you’ll find her story and the related materials motivating as well.
My interest in visual impairment and blindness is an intersection between my professional life and personal life. I am an adjunct faculty member at CSULA in the special education and counseling department. I teach EDSP 4690 “Psychosocial, and vocational implications of blindness and visual impairment”. Additionally, I am a credentialed and certified Orientation and Mobility Specialist within a Jr. High and High School district in Southern CA. Basically, I teach individuals with visual impairment how to safely, independently, efficiently and gracefully travel. My passion for this field arose when my son was born totally congenitally blind. Through my personal journey raising a child who is blind, I have had the pleasure of meeting, and getting to know many individuals with RP, or a similar retinal disorder which results in vision loss.
For more information on Retinitis Pigmentosa (RP) or visual impairment, please follow any of the four links below:
- Current Research in the Field
- Support Materials (community/national organizations, etc.)
- Personal Testimonies
- Jobs and Information about Jobs in Related Fields