Inside the world of: becoming fully blind | KSNF/KODE
JOPLIN, Mo. – According to the CDC, 61 million adults in the United States – or 26% – live with a disability. Of those individuals, 4.6% are vision impaired. So what’s it like losing the gift of sight? This is inside the world of: becoming fully blind.
Joplin local, 68-year-old Chip Hailey wasn’t born blind. In fact, Hailey had sight until he was 16-years-old. Now, Hailey is fully blind and also struggles with moderate hearing loss. It has been a journey of acceptance, but Hailey preaches the importance of adjusting to life’s challenges. Now, he advocates for the rights of the blind community and is a spokesperson for disability rights.
At 12-years-old, Hailey had a cataract on his right eye that needed removed. But before that could happen, an accident occurred.
One evening, he was playing baseball with his friends. The tattered ball was covered in black tape to hold it together, difficult to see in the night sky.
“With that cataract almost covering my pupil, I couldn’t see out of my right eye… The ball struck me in the eye and caused the eye to hemorrhage,” said Hailey.
He then had to have the eye surgically removed. Since then, a prosthetic has been in its place. Hailey managed with one eye until four years later.
In 1969, Hailey was tossing around a football with friends. While playing, he ran straight into a telephone pole on his blind side. It split his forehead open, requiring 18 stitches.
He recalls blood being everywhere and his mom saying “Oh god, oh god, please don’t let my boy die.”
“As a result of that blow, that caused detached retina to my left eye,” he said.
After that, the world was extremely bright, literally, for Hailey. He had always loved being outside but, because of the detached retina, he couldn’t bear the sun’s rays.
To fix the issue, doctors in Kansas City used silicone to reconnect his retina to his eye.
Then in 1978, Hailey caught pneumonia. Every time he coughed or sneezed, the mold behind the retina would tear until eventually it could no longer be repaired, rendering him fully blind.
Today, he wears a shell over the left eye for cosmetic reasons. He has also lost a portion of his hearing, making him feel even more limited.
“Not being able to see my kids grow up, having to depend on my wife to match my clothes for me, to read something for me, depending primarily on my hearing,” said Hailey. “With my hearing loss being this significant, caused me to have an even greater sense of disability. It made me feel that I was less of a person.“
From denial to acceptance
“When I first lost my sight, I was embarrassed about my blindness and I was ashamed. I hated being blind, I hated it because it took so much away from me – my independence and all the things that I love doing,” said Hailey.
The biggest adjustment for Hailey was going from an active lifestyle to not being able to navigate those activities anymore, along with no longer be able to drive himself around.
He especially used to love swimming and would perform tricks off the diving board. He was even encouraged by his peers to try out for the Olympics. It was a “huge loss” for Hailey.
On top of the physical loss, Hailey also lost many friends after losing his sight.
“A lot of my friends that I had before I lost my sight no longer came around. That hurt. That really hurt. I was still the same person inside, it’s just that I couldn’t see. I still wanted to go places, do things,” he said. “I still wanted to go to a basketball game or football game, even though I couldn’t see it, I still wanted to go and participate. But they quit coming around.”
And it didn’t get easier. Hailey was in denial about his condition.
“I held out for the hope that just maybe God might restore to me my sight, heal me,” he said.
In 1979, Hailey completed a six month program for blind individuals in three months, rushing the process.
“I hated every moment I was there… Because for me to learn that, I would have to accept that I was going to be blind all my life and I did not want to do that,” said Hailey.
When he arrived home from the program, he put away his white canes, braille writers and everything else that reminded him he was blind.
“I did not want people to identify me as being blind,” he said.
But then in 1985, Hailey “finally gave it up to God” and accepted his blindness for the first time.
“From that moment on, things changed so dramatically,” Hailey recalls.
In 1990, he went back to the same program for the blind that he had previously dismissed and “soaked it all up like a sponge.”
“I wanted to know how to thread a needle, brush my teeth… All those independent living skills… There wasn’t anything that they taught that I didn’t want to learn,” he said.
He then starting using a white cane, enrolled in school at Missouri Southern State University and got a guide dog to help him around.
In 1992, Hailey joined the Missouri Council of the Blind where he served many positions within the organization.
The next year, he traveled independently to San Francisco to attend the council’s national convention. He took his guide dog, got on the plane, and navigated his surroundings on his own.
“For me to do that was huge,” he said.
Starting in 1995, for two years, he worked on the board of directors for Joplin’s Independent Living Center.
That’s when things started to take off for Hailey. People starting calling him, asking him to represent the blind community. He continued with other roles at the center until 2018.
Hailey became a Public Policy Advocate in which he traveled to Jefferson City to meet with policy makers on issues that impact those with disabilities.
He also served on the Joplin Public Library and City of Joplin access committees, and has testified to Joplin City Council for disability rights multiple times.
He is currently on the government’s council for disability and is the Education and Advocacy Chair for Missouri Council of the Blind. Now, Hailey has been doing legislative work for the blind community for 30 years.
He is extremely thankful for the opportunities presented to him by Missouri Council of the Blind, the Joplin Independent Living Center and Missouri Assistive Technology.
Hailey says it’s his purpose to advocate for the blind community.
“I love it, I love talking to our legislators about our issues. There’s nothing like it – to be able to go to the capitol and to talk to them about our issues,” said Hailey.
“It’s been able to help me grow and develop as a person… You can see how passionate I am… Because I live with it everyday of my life. I’m faced with it every single day of my life… Just walking out my front door, no matter what I do, I’m faced with accessibility issues,” he continued.
Relying on technology & others
With the help of technology, Hailey is able to face many of those accessibility issues. He lives and breathes his iPhone and its tools.
“We didn’t have the technology 30, 35 years ago. Blind people could not access computers, access their phones, but today because of the technology we can,” said Hailey.
Hailey uses texting, email, the internet, listens to music, accesses his home’s heater and other appliances, all on his iPhone.
He has many applications that read things, identify things for him and even help him match his clothing.
But not all websites are blind-friendly, or screen reader accessible. Sometimes, Hailey is unable to navigate a website.
“We’ve come a long way, but we’ve got a long, long ways to go,” he said.
Another accessibility issue for Hailey is prescription labels. He thinks it is important to make prescription labels legible by vision impaired individuals, either by an application that reads it or with braille labels.
“The technology is there, it’s just about bringing accessible pharmacies for the blind here,” said Hailey.
Hailey and other members of the blind community advocated for an accessible pharmacy. He says that Missouri denied the proposal because there are “enough pharmacies already here in Missouri.”
Despite all that technology is able to do, Hailey still requires sighted assistance for outings.
To help with that, he now has a Service Support Provider provided by the state. A few times a month, the trained SSP comes with him to meetings, the grocery store to describe surroundings, relay information that he can’t hear, tell him the price of items and more.
Making voting accessible
Voting is a right, but for some people, it’s not so easy.
“I take voting seriously. I go to my voting precinct and they have equipment there that makes it where those of us who are blind, vision impaired… can use the accessible voting equipment and cast your vote privately and independently so you don’t need sighted assistance,” said Hailey.
For the last ten years, he has been walking into his voting precinct full of excitement to vote independently. Each time, he would leave disappointed because of an issue with the equipment or polling official’s lack of knowledge of how to use it. His wife always had to mark the ballot for him.
“Every time I left that polling precinct, I felt cheated… I didn’t get to vote privately or independently like so many of my blind brothers and sisters,” said Hailey.
He says that if he isn’t allowed the right to vote independently, that is telling him his vote doesn’t matter.
“We’ve got the technology today to do it, so why can’t I do this?” he continued.
Finally, in November 2020, Hailey was able to vote privately and independently for the first time. The equipment worked. He was ecstatic.
Hailey believes that instead of facing voting equipment or transportation issues for those with disabilities, accessible absentee voting my mail should be available, in which you vote from home and send in your ballot electronically.
“I’m fortunate that I’m married and my wife can take me to my polling precinct,” says Hailey, but many others with disabilities don’t have that support.
Educating the public, a message for the blind community
“People have got to get involved,” said Hailey.
Hailey says that the top factor in progressing disability rights is educating the public about disabilities. Unfortunately, unless an issue impacts someone directly, many of us don’t want to take the time, says Hailey.
“Unless it really affects people where they’re at, they oftentimes don’t want to get involved,” he said. “Because they’re not afflicted with some ailment, disease or disability, they don’t understand how important it is. But it is. I’m just as much a part of this community, society as my sighted peers.”
De-stigmatizing disabilities and spreading awareness allows those with disabilities to more comfortably face the world.
“Some places understand it… Other places don’t. They think I’m kind of weird. And I understand that… So it’s this educating process you have to go through with the public,” said Hailey.
To anyone else living with vision impairment and struggling, Hailey says to “give yourself time.”
“However long it takes… Give yourself the time you need to adjust and accept your blindness,” he said.
Hailey says you might go through denial, grief or anger in this process.
“The acceptance factor is so huge. Sometimes I think we try to rush people too much into accepting their disability,” he said.
And not only is one’s own acceptance of themselves important, other’s acceptance of those with disabilities is key.
“I am what I am. If people have a problem with it, then that’s their problem. It’s not mine,” said Hailey.
Hailey also suggests that those with disabilities involve themselves in groups of people similar to them.
If you are a vision impaired individual looking for community, contact Joplin Association for the Blind.