A lack of resources in education
The education system has excluded low vision and blind people by not providing appropriate services. That's according to Natalie Shaheen. Shaheen is an assistant professor of low vision and blindness at Illinois State University. She is also blind.
Shaheen said during elementary school, the only access to reading she had was when someone else read to her. Her school also did not provide braille in place of print instructions.
“The school for whatever reason didn’t follow the law and give me special education services. So, what that meant was that I was a blind kid in a school made for sighted people who had no accommodations. I literally had nothing, just trying to figure out how to just survive,” said Shaheen.
Not surprisingly, Shaheen said, she didn't do very well on math tests, and she couldn't enjoy reading as a young kid.
Shaheen said her school’s lack of care hurt her self-image, and it took years to overcome.
“Especially in elementary school what the school taught me, sometimes directly always indirectly, was that I was dumb because I couldn’t do things the way that all of my peers did. That was a harsh thing to hear,” said Shaheen.
Shaheen did not picture herself one day becoming a professor for blind people. But after her elementary experience, she said she wanted to teach disabled students to change the situation for other kids.
The education system still lacks enough teachers trained to teach low vision and blind people, and many blind students still don’t receive the support they need.
“The thing that really frustrates me today isn’t my own experience; I’m past that. But it’s that there are kids today who literally have the exact same experience that I had 20 plus years ago. They are having it right now today in 2021, and that is infuriating,” said Shaheen.
Another issue is that schools were designed by sighted people for sighted people. Shaheen says having more educators enter the field who can accommodate blind students and not assume that everybody learns the same is critical.
Preventing that assumption is particularly true for people who havecerebral visual impairments. That's when the eyes work. There is vision. But the brain doesn't process the same way.
ISU Assistant Professor Mindy Ely said cerebral visual impairments were only first diagnosed in the 80s, and now 60% of caseloads of blind students have a cerebral visual impairment.
There aren't many teachers at all who have experience with the condition. Ely said the education system needs to prepare educators to work in early intervention – kids between birth to 3-years-old – and help transition these kids into school systems.
Illinois State University's program for low vision and blindness is one of the few that works to prepare special education majors to teach blind and low vision students once they graduate. Ely said she worked to build a master’s program for special education majors wanting to teach blind students. This first year of the program has 14 people in it. And Ely said the overall program grew 67%.
"In the state of Illinois, we have 267 teachers of the visually impaired actively working, so when you add 14 in one year to that number, statistically it ‘a pretty significant number to be adding, so we’re super excited about that program," said Ely.
Broader society's handling of the need for accessible resources
The lack of accessible resources for the low vision and blind community goes well beyond the education system. Poor transportation, misconceptions and implicit bias, and a lack of access to affordable technologies all create barriers for the low vision and blind community.
That’s where the Life Center for Independent Living, or LifeCIL for short, comes into the picture.
LifeCIL advocates for people with disabilities in Bloomington-Normal and works to increase access to resources, allowing people to live independently.
LifeCIL Vision access advocate Kim Tarkowski said not knowing where to get orientation and mobility training to learn how to get around safely is a major issue. Tarkowski is blind and has gone through the same challenges as the people she now peer mentors through LifeCIL. Tarkowski said she wants to give others independence and resources to improve their lives.
LifeCIL supported 169 people in 2020 and typically supports nearly 200 in non-pandemic years. Tarkowski said affordable technologies – such as a magnifier – can make all the difference for the low vision community.
"Being able to give them that gift of more independence, more self-reliance is really a pretty empowering kind of option for working with somebody,” said Tarkowski.
Rickielee Benecke is the executive director at LifeCIL, and she works alongside Tarkowski. Benecke said it’s important for people with disabilities to know LifeCIL exists and to not be afraid to reach out.
“And I know of one particular consumer, they said that ‘without you, without LifeCIL and without Kim, I don’t know that I could have gone on. You guys have helped me get my life back, literally.’ He’s very grateful for all the services that he didn’t even know existed in the first place.”
Wayne Layton has lived in Bloomington-Normal since the 90s when he began working at State Farm. Layton is also part of the blind community and says that LifeCIL has made his experience living in Bloomington-Normal better. LifeCIL has provided him braille calendars, orientation and mobility training and has increased his knowledge of landmarks in town.
Even with help from LifeCIL, Layton said blind people remain excluded or lacking the same opportunities as sighted people.
“It makes you feel socially distant, and there is two aspects to that. One is you don’t feel a part of the community, and the other thing is you feel alone,” said Layton.
Layton said improving sidewalks and curb-crossings would help.
Greg Troemel is the Americans with Disabilities Act compliance coordinator for the Town of Normal. He said the town enforces the Americans with Disability Act anytime there are building renovations or construction done and enforces the Illinois Accessibility code to create fair opportunities for disabled individuals.
“It would be arrogant for us to sit here and say that everything we’ve got is accessible because that’s just not true. But what I can say is that we’re very responsive and we take this stuff very seriously. We have an ADA team that involves more than just myself because there’s a lot of built environment out in the world,” said Troemel.
Troemel said the Town of Normal works with LifeCIL to improve situations for low vision and blind people in Normal. The town recently updated their ADA Transition Plan to address accessibility barriers and updated their website to accommodate all citizens.
The lack of accessible resources in society still exists, and Bloomington-Normal resident Wayne Layton said he hopes establishments like the Town of Normal continue partnering with low vision and blind people.
“We are making changes. We're changing the infrastructure. We’re starting to get smarter about the things that we do. The only thing that I ask is make us a part of the process,” said Layton.
But it will take more than the input of people who have little or no vision to make things better. ISU Professor Natalie Shaheen said to truly support blind people everyone needs to learn about that experience and reflect broadly on implicit biases around blindness and disabilities.
