Key Issues and Debates

A recommendation to governments around the world to promote inclusion of the DeafBlind Community:

"Support organizations of persons with deafblindness and involve them as a distinct disability group in all consultations with disability movements."

(World Federation of the DeafBlind 2018)

DeafBlind Perspectives

"PTASL (ProTactile American Sign Language) benefits everyone on campus, even sighted people can feel included within the DeafBlind Community."

• DeafBlind student at Gallaudet University

(personal conversation, 2022)

"In the DeafBlind world, people do not all use tactile reception. Many people do, but we are not saying that people have to do that. That’s your decision."

• aj granda

("Welcome to ProTactile: The DeafBlind Way," 2013)

"An ideal education system for DeafBlind students does not demand unreasonable accommodations or concessions. It demands a return to the roots of higher education, where quality takes precedence over quantity and true learning and facility over mere schooling."

• John Lee Clark

(Where I Stand: On the Signing Community and My DeafBlind Experience, 2014)

"Disability drives innovation."

• Haben Girma

(interview with Time Magazine, 2020)

Under-Representation

DeafBlind individuals make up about 2% of the world's population (World Federation of the DeafBlind 2018, 47). Yet, are often excluded from decision-making processes that affect the DeafBlind community.

Ask yourself: do DeafBlind individuals make up 2% of your local school board? 2% of your local congress or parliament? 2% of the committee that writes up disability laws and policies for your local community and institutions? What about nationally? Internationally? If the answer is "no," consider how decisions that impact DeafBlind individuals could benefit from input from the DeafBlind community.

For example, how can we make voting ballots more accessible to DeafBlind individuals? What language and style of communication are preferred for the instruction of DeafBlind students? The people best equipped to make decisions on important issues like these are DeafBlind individuals themselves.

Inequality

The World Federation of the DeafBlind collected 43 survey responses from DeafBlind organizations around the world. High-income countries reported an average of 66% satisfaction with laws and policies that granted social protection or welfare to DeafBlind individuals. Low-income countries reported an average of 27% satisfaction on the same (World Federation of the DeafBlind 2018, 19).

One way to increase the satisfaction of social protection and welfare is by involving DeafBlind individuals in the decision-making process for relevant laws and policies.

Including DeafBlind leaders in policy design will boost the equality of DeafBlind individuals in society and advance our societies to a more equitable norm.

Biases and Assumptions

Biases toward DeafBlind individuals act as barriers to DeafBlind social equity. In a Ted Talk given by JennyLynn Dietrich (2019), she informs the audience that when people pity DeafBlind individuals with a frame of "lesser than," it actually hurts the DeafBlind community. It takes away from all the hard work the DeafBlind community has done to be seen as equals. JennyLynn informs the audience that DeafBlind people have shown to have the ability to have jobs, obtain an education, and have families.

Assumptions about DeafBlind individuals being incapable of participation in social and professional life bleed into various sectors. For example, are educators seeking out DeafBlind consultation regarding curriculum development for DeafBlind students, or are curriculums designed by hearing and sighted individuals? Appropriate decisions that impact DeafBlind individuals require a deeper understanding of the DeafBlind experience. All it takes to gain that deeper understanding is reaching out to a local DeafBlind leader, or organization. Reach out today, and base your decisions on knowledge and experience.

DeafBlind Community and Leader Efforts

DeafBlind advocates are banding together, leading movements, and empowering one another to push for meaningful change.

The Pro-Tactile movement has spread across the United States in a rapid social revolution where the DeafBlind community has taken charge of its language and communicative preferences. "Pro-Tactile is a philosophy that guides action in everyday life. It is a socio-cultural movement that is affecting personal, political... and linguistic dimensions of our everyday lives" (aj granda, 2013).

One example, Tactile Communications, founded by a prominent DeafBlind advocate - Jelica Nuccio, is a training center run by DeafBlind individuals for DeafBlind individuals in the navigation of everyday life, accommodations, and communication. Tactile Communications also serves as a consultant to workplaces, families, friends, educators, and any organization that wants to better serve their DeafBlind community members.

The World Federation of the Blind has documented at least 76 associations around the world that advocate for the DeafBlind community (World Federation of the DeafBlind 2018, 15). Several are featured in the "Work of Existing Organizations" tab above.

If you want to learn more about DeafBlind leaders and their work - aj granda, JennyLynn Dietrich, Roberto Cabrera, and more - they are featured in the "Media" tab above.

The United Nations 2030 Agenda for Sustainable Development includes 17 goals. Including DeafBlind leaders in decision-making will advance every goal, but can particularly impact the three listed below:

References

Caldwell, Jenna. 2022. "'We Find Ways to Come Up With Solutions.'

Haben Girma on How Drives Innovation." Time Magazine.

https://time.com/5881870/haben-girma-how-disability-drives-

innovation/.

Clark, John Lee. 2014. Where I Stand: On the Signing Community and My

DeafBlind Experience. United States: Handtype Press.

Dietrich, JennyLynn. 2019. "DeafBlind: Blind But Not Blind." Tedx

Talks: Salem. https://www.youtube.com/watch?v=6uxZ4u6nses.

granda, aj. 2013. "Welcome to Protactile: the DeafBlind Way." Video

Blog. http://www.protactile.org.

World Federation of the DeafBlind. 2018. “At Risk of Exclusion from

CRPD and SDGs Implementation: Inequality and Persons with

Deafblindness.” Initial Global Report on Situation and Rights of Persons with Deafblindness: 1-61.