Long before I knew I had Hermansky-Pudlak Syndrome, I was very actively involved in advocating for blindness-related issues as a member of the National Federation of the Blind. One of the biggest issues for America’s blind and legally blind citizens is unemployment and underemployment.
Let me begin by saying what I’m not. I’m not a vocational rehabilitation professional. I’m not a teacher of the visually impaired. I’m just a person with low vision who has been through the system and happens to know a whole lot of blind and legally blind people. My opinions are based on observation, not objective data, although if anyone knows of objective data out there I’d be really interested in reading it.
The problem of unemployment and underemployment among blind and legally blind people is complex – very solvable – but complex. Like any other segment of the population, we’re not all the same and one solution doesn’t fit all of us. That being said, here are some of the issues I’ve observed.
1. Lack of adequate elementary or secondary education in a well-rounded manner
This isn’t true for everyone. But, it seems that sometimes strapped school districts with increasing demands on their budgets can have a hard time always providing adequate services. Lots of kids in not-so-wealthy school districts don’t get the benefit of the latest adaptive technology etc. Sometimes it’s the low vision kids that come out the worst in this. If a kid is totally blind, it’s pretty obvious you can’t hand them print materials etc. But often low vision kids can “get by” and so that’s exactly what they do - “get by.” Sometimes kids come through the system with brilliant academics, but horrible social skills and no ability to advocate for themselves. They might have read every Braille book in the universe, but they can’t figure out how to interact with their peers, go to a school dance or play a sport. Those things are just as important as the academics. Being brilliant doesn’t do you a lot of good if you can’t interact with the world well.
2. Lack of availability of good vocational rehabilitation services
This is critical to employment. I feel that I was very lucky, and very blessed, that I had the opportunity to attend the Louisiana Center for the Blind before leaving for college. I am forever grateful to Joanne Wilson, the director at the time, who took on this kid from Germany that she’d never even met. I didn’t even know all the things I didn’t know – or how useful some of those skills would become. If I had it to do over again, I would have stayed in the program longer and really nailed down my Braille skills – something I’ve all but lost now.
The thing is the quality of vocational rehabilitation programs varies widely. Also, it’s not always possible for someone to leave their home and family behind for several months to obtain these skills. While many states provide home teachers, they’re generally stretched extremely thin. The employability factor, however, for someone who can find their way from point A to point B independently, travel independently, adapt well to varying situations, has a good grasp of all the blindness and low vision tools out there etc. and someone who appears lost all the time, doesn’t display much confidence and is constantly in need of help with simple tasks is, understandably, huge.
I was also very lucky in that when I went on to the state of Kansas for my education, I was very lucky to have two absolutely wonderful vocational rehabilitation counselors. I always had what I needed in a pretty timely manner. That doesn’t happen for everyone. I was very blessed.
After the good state of Kansas spent thousands and thousands of dollars on my education, however, the system at the time (I can’t speak for it now) had a very poor program in place to transition from school to employment.
I was assigned someone to help in my job hunt who had never worked with anyone that had vision issues. He was impressed that I could walk across a parking lot independently. This was the guy that was supposed to help me find a professional job in journalism? He was used to surfing the want-ads helping mentally challenged people find jobs as dish washers. He actually took it upon himself, without consulting with me, to call up newspaper and magazine editors on my behalf. He’d say something like, “I have this legally blind client…” Why not just shoot me in the foot? Especially in the field of journalism where you have to be a go-getter and being shy doesn’t do you any favors, this guy was more of a hurt than a help. The one time I asked him for some help driving me to a job interview, he was 45 minutes late.
3. Lack of expectations
Expectations are something you learn early in life. So often I hear new parents of kids with albinism so worried about what their child’s vision will be. While I see nothing wrong with trying to maximize that visual development, when I have the opportunity, I try to impress upon these parents that their expectations will have far more to do with their child’s success in life than their visual acuity. If you’re told your whole life that you can’t do something, you start to believe it.
The same is true for people that lose their vision later in life. They are often held hostage by their own negative attitudes about blindness and low vision learned from the greater society. Their expectations of themselves are sometimes too low. Learning to be an independent blind person is about more than learning to use a cane or Braille (although that’s important) – it’s also about expecting those skills to carry you through. For that, one needs good role models and experiences that test your limits.
4. A lack of programs equipped to help people with multiple disabilities
Working with blind youth it’s been my observation that often the kids that really fall through the cracks are the kids with multiple disabilities. Often the programs designed to deal with blindness are poorly equipped to handle other disabilities such as cognitive issues or even mental health issues.
5. Lastly, the need for decent health care
I think that too often the blindness community doesn’t fully appreciate the needs of those of us who have major medical issues and the impact that plays on employment. I know that the Social Security Administration has worked hard to create incentives to work – programs like the P.A.S.S. plan or the ability to retain Medicaid coverage for a certain amount of time post employment. But, if you have truly mammoth medical bills even those programs often aren’t enough. I know several people that would be capable of working, but after the long battle to become eligible for Medicare (something that can take years) are hesitant to risk losing that coverage. Corporate medical plans increasingly cost more and cover less – and if you have a lot to cover sometimes the gap is just too much to breach.
As I said, these are just my observations. I certainly wouldn’t have expected the Associated Press reporter to get that all to fit in a 12 inch story.
But, the problems of unemployment and underemployment go way beyond the discrimination of society. It’s just more complicated than that.
Let me begin by saying what I’m not. I’m not a vocational rehabilitation professional. I’m not a teacher of the visually impaired. I’m just a person with low vision who has been through the system and happens to know a whole lot of blind and legally blind people. My opinions are based on observation, not objective data, although if anyone knows of objective data out there I’d be really interested in reading it.
The problem of unemployment and underemployment among blind and legally blind people is complex – very solvable – but complex. Like any other segment of the population, we’re not all the same and one solution doesn’t fit all of us. That being said, here are some of the issues I’ve observed.
1. Lack of adequate elementary or secondary education in a well-rounded manner
This isn’t true for everyone. But, it seems that sometimes strapped school districts with increasing demands on their budgets can have a hard time always providing adequate services. Lots of kids in not-so-wealthy school districts don’t get the benefit of the latest adaptive technology etc. Sometimes it’s the low vision kids that come out the worst in this. If a kid is totally blind, it’s pretty obvious you can’t hand them print materials etc. But often low vision kids can “get by” and so that’s exactly what they do - “get by.” Sometimes kids come through the system with brilliant academics, but horrible social skills and no ability to advocate for themselves. They might have read every Braille book in the universe, but they can’t figure out how to interact with their peers, go to a school dance or play a sport. Those things are just as important as the academics. Being brilliant doesn’t do you a lot of good if you can’t interact with the world well.
2. Lack of availability of good vocational rehabilitation services
This is critical to employment. I feel that I was very lucky, and very blessed, that I had the opportunity to attend the Louisiana Center for the Blind before leaving for college. I am forever grateful to Joanne Wilson, the director at the time, who took on this kid from Germany that she’d never even met. I didn’t even know all the things I didn’t know – or how useful some of those skills would become. If I had it to do over again, I would have stayed in the program longer and really nailed down my Braille skills – something I’ve all but lost now.
The thing is the quality of vocational rehabilitation programs varies widely. Also, it’s not always possible for someone to leave their home and family behind for several months to obtain these skills. While many states provide home teachers, they’re generally stretched extremely thin. The employability factor, however, for someone who can find their way from point A to point B independently, travel independently, adapt well to varying situations, has a good grasp of all the blindness and low vision tools out there etc. and someone who appears lost all the time, doesn’t display much confidence and is constantly in need of help with simple tasks is, understandably, huge.
I was also very lucky in that when I went on to the state of Kansas for my education, I was very lucky to have two absolutely wonderful vocational rehabilitation counselors. I always had what I needed in a pretty timely manner. That doesn’t happen for everyone. I was very blessed.
After the good state of Kansas spent thousands and thousands of dollars on my education, however, the system at the time (I can’t speak for it now) had a very poor program in place to transition from school to employment.
I was assigned someone to help in my job hunt who had never worked with anyone that had vision issues. He was impressed that I could walk across a parking lot independently. This was the guy that was supposed to help me find a professional job in journalism? He was used to surfing the want-ads helping mentally challenged people find jobs as dish washers. He actually took it upon himself, without consulting with me, to call up newspaper and magazine editors on my behalf. He’d say something like, “I have this legally blind client…” Why not just shoot me in the foot? Especially in the field of journalism where you have to be a go-getter and being shy doesn’t do you any favors, this guy was more of a hurt than a help. The one time I asked him for some help driving me to a job interview, he was 45 minutes late.
3. Lack of expectations
Expectations are something you learn early in life. So often I hear new parents of kids with albinism so worried about what their child’s vision will be. While I see nothing wrong with trying to maximize that visual development, when I have the opportunity, I try to impress upon these parents that their expectations will have far more to do with their child’s success in life than their visual acuity. If you’re told your whole life that you can’t do something, you start to believe it.
The same is true for people that lose their vision later in life. They are often held hostage by their own negative attitudes about blindness and low vision learned from the greater society. Their expectations of themselves are sometimes too low. Learning to be an independent blind person is about more than learning to use a cane or Braille (although that’s important) – it’s also about expecting those skills to carry you through. For that, one needs good role models and experiences that test your limits.
4. A lack of programs equipped to help people with multiple disabilities
Working with blind youth it’s been my observation that often the kids that really fall through the cracks are the kids with multiple disabilities. Often the programs designed to deal with blindness are poorly equipped to handle other disabilities such as cognitive issues or even mental health issues.
5. Lastly, the need for decent health care
I think that too often the blindness community doesn’t fully appreciate the needs of those of us who have major medical issues and the impact that plays on employment. I know that the Social Security Administration has worked hard to create incentives to work – programs like the P.A.S.S. plan or the ability to retain Medicaid coverage for a certain amount of time post employment. But, if you have truly mammoth medical bills even those programs often aren’t enough. I know several people that would be capable of working, but after the long battle to become eligible for Medicare (something that can take years) are hesitant to risk losing that coverage. Corporate medical plans increasingly cost more and cover less – and if you have a lot to cover sometimes the gap is just too much to breach.
As I said, these are just my observations. I certainly wouldn’t have expected the Associated Press reporter to get that all to fit in a 12 inch story.
But, the problems of unemployment and underemployment go way beyond the discrimination of society. It’s just more complicated than that.
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