Most of us like to talk. We like to talk a lot. But have you ever stopped for a moment and considered how different life might be if you couldn’t seem to find the words you wanted to use in a sentence—not just one sentence, but every sentence, every day? People with a condition called may even have trouble reading this article, but once they comprehend it’s discussing their disorder, they’ll know exactly how it feels to deal with this problem every moment of their lives.
Jes Porro, who works with technology and at SCALE, further explains why such organizations provide an important part of the patient’s recovery. “Those with aphasia might have difficulty retrieving words, and the damage could be severe enough to make any speech difficult. As a result, aphasia becomes terribly isolating. While others may complete standard therapy and recover, people with the continuing issues brought on by aphasia often have nowhere to go. They stay at home and watch television, read. So [the Snyder Center] is where they come. They find other people like them. They learn new skills, and continue to grow. For some, language improves, but that is not our only goal. Our primary goal is to enhance their lives.”
The rich variety of programs at SCALE include technology classes to help people explore the internet and social media, painting and pottery classes, horticulture projects, photography courses, and even yoga, which provides attendees the opportunity to be physically and socially active without feeling pressure to be verbally communicative.
While Porro has no traditional medical training, she brings enthusiasm, patience, and technical expertise to her work and hopes others will be inspired to share their own skills through SCALE once they learn about the center. Porro’s own trajectory with the SCALE community began as a volunteer, helping the staff create a series of VAST videos (Video Assisted Speech Technology) to show survivors of aphasia how the mouth moves for certain words, by illustrating how the word is spoken, and by giving the audio of each sound that makes up the word (a therapy developed at The Stroke Comeback Center). Her volunteer work turned into a staff position as the center recognized her expertise with computer technologies as well as her dedication to teaching others how to work with those technologies.
“What draws me, and keeps me passionate about working here is that very few people know about [this condition,] even though anyone could eventually struggle with it.” Porro’s current project for raising awareness is to create a gallery show of photos taken by participants. “I want to take the show on the road to showcase not only some great photography but also to help people understand exactly what aphasia is.”
McCall concurs with the need to educate the public. Although over a million Americans live with aphasia, “one of the difficulties the National Aphasia Association and local organizations like SCALE face is that the condition has no official spokesperson…no Michael J. Fox or Jerry Lewis to speak for them.”
Aphasia can have an impact on an individual and his or her family for many years, a fact that can sometimes work to the financial benefit of centers like SCALE. Donors often launch or support such programs to help someone within their families, but the ongoing need to educate the general public about the affliction and how its effects can be ameliorated remain challenging.
To alleviate some of the funding challenges, staff and volunteers at SCALE have built powerful relationships with other regional nonprofits in order to share resources and opportunities.
“Two components make our program unique among the centers,” points out McCall, “First, our technology program uses hardware and software developed in the last decade specifically for people with aphasia, to help and support them with reading, writing, listening, and speaking. Second, we have a strong focus on community outreach. One of the ways we believe people adjust well to living with a disability is to re-engage with community. So we partner with other nonprofit agencies in the area so our members can participate in a broad scope of programs.Our members have done work withthe National Aquarium, the Department of Agriculture, and the City of Baltimore’s Department of Recreation and Parks.”
McCall sees this interaction as “synchronicity,” and an opportunity for members to engage in a community program that interacts with other groups. “Everyone learns from each other, a community project moves forward, and survivors with aphasia experience richer lives with their peers. We are collecting data to show the efficacy of such long-term support to show that people with aphasia continue to improve long past their initial recovery period. Efforts are being made to partner with other aphasia centers to collect that evidence.”
Also working with the various centers around the country to spearhead education and fundraising is the National Aphasia Association, an umbrella organization dovetailing such varied outreach, education, and fund-raising. Executive Director Ellayne Ganzfried describes the NAA as “the first national organization dedicated to advocating for persons with aphasia and their families. We want to be the conduit of information for people with Aphasia and their families.”
Their work includes educating the public, offering training and materials for first responders, and providing artistic outlets for people dealing with the disorder. In our next ‘Perspectives,’ we’ll further explore the breadth of programs and outreach provided by the NAA.
Aphasis Awareness: Ask, Wait, Listen.