This year we celebrate Deaf-Blind Awareness Week from June 26th to July 2nd. The focus this year is Diversity and Inclusion. Who better to help initiate that innovation than the Deaf-Blind community, a group of people whose lives are driven by the pursuit of change and innovation?
"Helen Keller was an amazing advocate. She lived from 1880 to 1968. She advocated for women's rights, disabilities rights, workers rights. She spent her whole life advocating. And yet many stories of Helen reduce her to one theme: she succeeded despite her disability. Disability never holds anyone back. Disability is not something that people need to overcome. The barriers that exist are created by society, and it's up to every single one of us to work together to remove those barriers. Helen was successful because she is part of communities that chose to practice inclusion."
- Haben Girma, Disabilities Rights Lawyer
Those that are deafblind have a combination of visual and hearing impairments. Two percent of the world's population has some form of deafblindness, and 0.2% of people are living with severe deafblindness (WFDB Report 2018). There are several different causes of deafblindness, varying levels of impairment, and many forms in which those that are deafblind can communicate.
In honor of Helen Keller's birthday and Deafblind Awareness Week we will highlight a few individuals in the deafblind community that have shared their story for us all to learn from.
"Language is the key to inclusion."
Jelica Nuccio teaches Protactile American Sign Language (PTASL) and is the founder of Tactile Communications, LLC. PTASL was created in the deafblind community and is based entirely on touch. Let Jelica Nuccio speak for herself telling the story of why she signs in PTASL and why it creates the connection that this language brings to the deafblind community in this video. #WhyISignPTASL
"Knowledge gained through touch, is equal in value to knowledge gained through sight, sound."
Haben Girma is a disability rights lawyer, a black woman, a child of refugees, and the first deafblind graduate from Harvard Law School. She shares her story in a memoir Haben: The Deafblind Woman Who Conquered Harvard Law. She uses her talents and story to promote inclusivity and advocate for those with disabilities. Girma helped develop a digital braille device that allows her to read information typed through a computer keyboard. She advocates for the advancement of technology, society, and innovation to improve the quality of life and voices for those with disabilities - salsa dancing included. As she keeps innovating and advocating, she calls upon all of us to do the same.
"Please be in touch with us.... touch is a core value of our community, it improves our quality of life, through autonomy, through acceptance."
JennyLynn Dietrich is a deafblind individual who advocates for the deafblind community and all disabled communities. She uses both American Sign Language (ASL) and Protactile ASL. During her TedTalk featured below, she uses a Support Service Provider (SSP) who interprets what is happening in the audience while she delivers her speech.
As she shares her story, she also shares the message of the importance of autonomy and equality for deafblind individuals, disabled individuals, for all individuals. She elaborates on and condemns the use of inspiration porn. Instead, she offers advice to ensure you are respecting the autonomy of a deafblind individual: 1) "Don't assume that we need help, ask first" 2) "Don't grab us, don't grab our white canes" 3) "Please have patience, expect and allow additional time to engage with us" and 4) "If you see someone who is deafblind sitting alone... interact with us." See her TedTalk here.
"We deserve to be seen."
Alexandra Elaine Adams was the UK's first deafblind med student. She is a public speaker, writer, and ex-swimmer, and skier. After being diagnosed with a mitochondrial disorder, she spent over a year in the hospital. Her time spent there inspired her to go to medical school. She shares her story and ups and downs of being a deafblind medical school student through her blog and shares photographs and stories of NHS staff in Faces of the NHS.
American Association of the Deaf-Blind
Helen Keller National Center for Deafblind Youths & Adults
National Center on Deaf-Blindness
World Federation of the DeafBlind
National Family Association for Deaf-Blind (NFADB)
Written by Kathryn Berlin Schaubhut