College is a kick in the head. I'm enjoying it but wow. Who takes four science classes in the same semester? It's foolishness.
It's strange being a disabled student. I get looked at a lot when I'm using my cane. I just ignore the stares because to acknowledge them would be even more confusing. I find walking around campus to be stressful. I'm constantly on guard from all the traffic and when I get to my destination I'm tired.
Gripes over. I'm actually enjoying myself. I enjoy having a task to tackle. The people have been nice. Most of my professor's met with me to go over concerns either they had or so I could tell them what I need. I'm optimistic this will work out.
Showing posts with label Blind. Show all posts
Showing posts with label Blind. Show all posts
Friday, January 15, 2016
Wednesday, January 6, 2016
Losing Well Part 23
Continuation of my series, Losing Well. Part 1 can be found here.
November 13, 2014
Two years after I went out on leave due to my visual disability, I got a letter in the mail welcoming me to Medicare. A lot of people are, understandably, very happy when this day comes. Me? Not so much.
I didn't request to participate in Medicare. The government just automatically signed me up for Medicare Plan A and Plan B. Plan A is free to me and covers hospital stays. Plan B will cost me $104 a month, increases yearly, and is a major medical plan. To get a truly functional health plan I'd need to pay for Plan C; a Medicare Advantage plan offered by an HMO/PPO.
Thing is, I don't need Medicare. I have insurance already through my employer. And since my plan provides for my family, I'm not making any changes. So clearly I'm not going to pay for Plan C - I don't need two complete health policies for one person. And Plan B looks redundant and not worth the expense. I'll keep Plan A because it literally isn't possible to cancel.
So here's the rub, the government has built in an incentive to try and force me to sign-up for Plan B. If I don't sign up when Plan B is first made available and I want to sign-up at a later date, there will be a penalty. Plan B will go up 10% in cost for every year that I'm eligible but didn't participate.
So If ten years from now I lose my employer based insurance and want to get Plan B it will cost me $208 (in 2014 dollars) instead of $104. A month, every month! If I wait 15 years, it will cost $260. Remember this is just for a major medical plan, not an actual health plan. I'd still have to pay for Medicare Advantage separately.
I talked to the Social Security administration and they confirmed that there is no cap to the 10% yearly penalty. They said it would reset when I hit 65, over two decades from now. In theory I could end up having to pay more than 240% in penalties on a monthly basis if I lose my employer based insurance.
But isn't that why we have the affordable care act? If I lose my insurance I can just jump on healthcare.gov and buy a plan from the exchanges. But I can't. Since the government signed me up for Medicare, I lost the ability to buy insurance on the open market. Providers are only allowed to sell me Medicare Advantage plans, which I have to purchase Plan B to qualify for.
Normally, Medicare doesn't impose the Plan B penalty on people who have employer based insurance. But for some unexplained reason, people in my situation do not qualify for the penalty exemption based upon how the IRS taxes my income.
So I'm left with a choice. If I waive Plan B the government will start adding the fees onto to my hypothetical premiums. Which wouldn't matter as long as I keep my employer based insurance. But we live in uncertain times. My employer is not required by law to allow my participation on their health plan. And I assume they could remove me from it. This might get them some bad press but other companies have removed insurance access to their disabled/retired employees.
So until I hit the age of 65, will I really be able to participate in my employer's plan? I hope so. But can I realistically count on it? Since I will not be allowed onto the open market to purchase a health plan, it's hard to see how I do anything but pay the Plan B $1,250 yearly fee.
I might be able to make back a small percentage of the Plan B premiums if Plan B covers my employee based insurance policy co-pays. But the vast majority of my Plan B premiums are going to be wasted on a product I'm already purchasing. I'm essentially buying Plan B as a hedge against my actually insurance plan going away. Plan B is functioning more as very expensive liability insurance. On my insurance.
Oh, well. My family didn't need that money anyway.
To be continued. . .
November 13, 2014
Two years after I went out on leave due to my visual disability, I got a letter in the mail welcoming me to Medicare. A lot of people are, understandably, very happy when this day comes. Me? Not so much.
I didn't request to participate in Medicare. The government just automatically signed me up for Medicare Plan A and Plan B. Plan A is free to me and covers hospital stays. Plan B will cost me $104 a month, increases yearly, and is a major medical plan. To get a truly functional health plan I'd need to pay for Plan C; a Medicare Advantage plan offered by an HMO/PPO.
Thing is, I don't need Medicare. I have insurance already through my employer. And since my plan provides for my family, I'm not making any changes. So clearly I'm not going to pay for Plan C - I don't need two complete health policies for one person. And Plan B looks redundant and not worth the expense. I'll keep Plan A because it literally isn't possible to cancel.
So here's the rub, the government has built in an incentive to try and force me to sign-up for Plan B. If I don't sign up when Plan B is first made available and I want to sign-up at a later date, there will be a penalty. Plan B will go up 10% in cost for every year that I'm eligible but didn't participate.
So If ten years from now I lose my employer based insurance and want to get Plan B it will cost me $208 (in 2014 dollars) instead of $104. A month, every month! If I wait 15 years, it will cost $260. Remember this is just for a major medical plan, not an actual health plan. I'd still have to pay for Medicare Advantage separately.
I talked to the Social Security administration and they confirmed that there is no cap to the 10% yearly penalty. They said it would reset when I hit 65, over two decades from now. In theory I could end up having to pay more than 240% in penalties on a monthly basis if I lose my employer based insurance.
But isn't that why we have the affordable care act? If I lose my insurance I can just jump on healthcare.gov and buy a plan from the exchanges. But I can't. Since the government signed me up for Medicare, I lost the ability to buy insurance on the open market. Providers are only allowed to sell me Medicare Advantage plans, which I have to purchase Plan B to qualify for.
Normally, Medicare doesn't impose the Plan B penalty on people who have employer based insurance. But for some unexplained reason, people in my situation do not qualify for the penalty exemption based upon how the IRS taxes my income.
So I'm left with a choice. If I waive Plan B the government will start adding the fees onto to my hypothetical premiums. Which wouldn't matter as long as I keep my employer based insurance. But we live in uncertain times. My employer is not required by law to allow my participation on their health plan. And I assume they could remove me from it. This might get them some bad press but other companies have removed insurance access to their disabled/retired employees.
So until I hit the age of 65, will I really be able to participate in my employer's plan? I hope so. But can I realistically count on it? Since I will not be allowed onto the open market to purchase a health plan, it's hard to see how I do anything but pay the Plan B $1,250 yearly fee.
I might be able to make back a small percentage of the Plan B premiums if Plan B covers my employee based insurance policy co-pays. But the vast majority of my Plan B premiums are going to be wasted on a product I'm already purchasing. I'm essentially buying Plan B as a hedge against my actually insurance plan going away. Plan B is functioning more as very expensive liability insurance. On my insurance.
Oh, well. My family didn't need that money anyway.
To be continued. . .
Losing Well Part 22
Continuation of my series, Losing Well. Part 1 can be found here.
December 2015
2013 was my first full year on disability. But it didn’t really feel like my time was idle. I was raising kids, doing housework, helping with homework. It was a busy time. I didn’t find it as intellectually challenging as work. I also didn’t find it as stressful.
Kate’s consulting business started to take off. She was able to make up most of the family income that I’d lost by going on disability. And she seemed a lot happier to be working than staying at home. She’d gotten bored and now she was working for herself. I was a bit envious.
My LTD insurance agent had been telling me that I had nothing to worry about. I’d cleared the investigation. At 18 months I’d be put onto “long term maintenance.” So I wasn’t too worried about my finances. I was amazed that they had spent so much money on my case. I guess they'd been hoping to catch me driving a car. I'm dumb not suicidal.
April 9, 2014
I was using my cane and somebody stopped to ask me driving directions. How desperate are you? But I was able to give directions.
May 23, 2014
Upon request of my medical physician, I went to an Urgent Care to get a Tetanus shot for a minor cut on my leg. I totally didn’t see that metal can. I should always use my cane. Arrogance will give you lockjaw.
July 11, 2014
Some loser came at me with a four letter tirade about how I shouldn't fake being blind. I didn't take it well. I thought he was going to sucker punch me. These guys are always the same. And the older I get the less patience I have.
December 2015
In July of 2014 I was told that I had a new LTD agent. He told me that he that my vote to go onto long term maintenance wasn't a sure thing. He was reviewing my case and everything was back on the table. This was not welcome news. It threw everything back into flux.
August 4, 2014
My new agent just told me that "If I had your skill set I would have found a way to adapt to losing my vision." An interesting way to try and shame me for my disability.
August 15, 2014
Appointment made to get new glasses to replace broken pair. Kids + disability = expensive.
December 2015
In September of 2014, my agent called to tell me that there had been a round table vote on if I would go on long term maintenance. He said there was one vote against - the vocational rehab case worker thought I should still be able to work. This contradicted a written statement from my Retina Specialist Ophthalmologist. She apparently knew more than my eye doctor.
The way my insurance policy was written, I had to prove that I couldn’t do any job, not just prove I couldn’t do the job I was working. In theory this meant my insurance company could force me to work at a fast food restaurant. My agent told me that if the vocational rehab coordinator could find a job for me within a sixty mile radius of my home, they’d cut me if I didn’t apply for it. My response was to ask them what job they thought I could work. He couldn’t name one. Then I asked him how I’d get to the job. He said the way the contract was written, transportation isn’t a consideration. Transportation and childcare would be my expense. Even if I was working a minimum wage job. There’s no way I could afford to get a job.
September 12, 2014
The ERSIA [Employee Retirement Income Security Act] lawyer I spoke to today said that of all the people he's spoken to this week, I'm the one he thinks won't have any problem. He told me not to comply with my insurance company requests unless they were in writing.
October 8, 2014
Got a letter today that indicated my insurance company has been accessing my general health medical history. I’d told them not to back in 2012. The letter indicates that they had been violating my HIPPA rights for the past 11 months. When I called, they stated they had not been and that the letter was sent in error. Because they’re so trustworthy, I believe them.
Part 23 can be found here.
December 2015
2013 was my first full year on disability. But it didn’t really feel like my time was idle. I was raising kids, doing housework, helping with homework. It was a busy time. I didn’t find it as intellectually challenging as work. I also didn’t find it as stressful.
Kate’s consulting business started to take off. She was able to make up most of the family income that I’d lost by going on disability. And she seemed a lot happier to be working than staying at home. She’d gotten bored and now she was working for herself. I was a bit envious.
My LTD insurance agent had been telling me that I had nothing to worry about. I’d cleared the investigation. At 18 months I’d be put onto “long term maintenance.” So I wasn’t too worried about my finances. I was amazed that they had spent so much money on my case. I guess they'd been hoping to catch me driving a car. I'm dumb not suicidal.
April 9, 2014
I was using my cane and somebody stopped to ask me driving directions. How desperate are you? But I was able to give directions.
May 23, 2014
Upon request of my medical physician, I went to an Urgent Care to get a Tetanus shot for a minor cut on my leg. I totally didn’t see that metal can. I should always use my cane. Arrogance will give you lockjaw.
July 11, 2014
Some loser came at me with a four letter tirade about how I shouldn't fake being blind. I didn't take it well. I thought he was going to sucker punch me. These guys are always the same. And the older I get the less patience I have.
December 2015
In July of 2014 I was told that I had a new LTD agent. He told me that he that my vote to go onto long term maintenance wasn't a sure thing. He was reviewing my case and everything was back on the table. This was not welcome news. It threw everything back into flux.
August 4, 2014
My new agent just told me that "If I had your skill set I would have found a way to adapt to losing my vision." An interesting way to try and shame me for my disability.
August 15, 2014
Appointment made to get new glasses to replace broken pair. Kids + disability = expensive.
December 2015
In September of 2014, my agent called to tell me that there had been a round table vote on if I would go on long term maintenance. He said there was one vote against - the vocational rehab case worker thought I should still be able to work. This contradicted a written statement from my Retina Specialist Ophthalmologist. She apparently knew more than my eye doctor.
The way my insurance policy was written, I had to prove that I couldn’t do any job, not just prove I couldn’t do the job I was working. In theory this meant my insurance company could force me to work at a fast food restaurant. My agent told me that if the vocational rehab coordinator could find a job for me within a sixty mile radius of my home, they’d cut me if I didn’t apply for it. My response was to ask them what job they thought I could work. He couldn’t name one. Then I asked him how I’d get to the job. He said the way the contract was written, transportation isn’t a consideration. Transportation and childcare would be my expense. Even if I was working a minimum wage job. There’s no way I could afford to get a job.
September 12, 2014
The ERSIA [Employee Retirement Income Security Act] lawyer I spoke to today said that of all the people he's spoken to this week, I'm the one he thinks won't have any problem. He told me not to comply with my insurance company requests unless they were in writing.
October 8, 2014
Got a letter today that indicated my insurance company has been accessing my general health medical history. I’d told them not to back in 2012. The letter indicates that they had been violating my HIPPA rights for the past 11 months. When I called, they stated they had not been and that the letter was sent in error. Because they’re so trustworthy, I believe them.
Part 23 can be found here.
Losing Well Part 21
Continuation of my series, Losing Well. Part 1 can be found here.
December 2015
Spring of 2013. After six months, I moved from short term disability to long term disability and my insurance company requested that I signup for Social Security Disability. They paid for an outside firm to help submit my application. It normally takes two years to get approved for SSDI. My application was approved in 29 days. The government doesn't seem to see the need to fight visual impairment like they would other disabilities. It’s just a measurement to them.
My case worker from the Social Security Administration called and said that I should have my payments changed over into my wife’s name. I have no idea why she thought this was a good idea but I refused. The case worker seemed pretty upset that I didn’t do what they had told me. Story of my life, get in line. She then asked if I was the head of house. I told them I was. They said I could get money for my kids and I should submit an application for them. I sighed and told them to look at their computer because that application had already been submitted. Two weeks later my children’s application was approved.
My insurance policy with the bank said I should make 60% of my former salary plus bonuses. After SSDI. In reality, my state didn’t count my SSDI as income. This meant I made more like 70% of my former salary. Here ’s how my income would breakout over time, assuming I made $1,000 a year:
$280 - SSDI
$140 - SSDI for my children
$230 - LTD Insurance Policy
Total = $650
As my children turned 18 they would stop getting SSDI so my income would look like this:
$280 SSDI
$370 LTD insurance Policy
Total = $650
And when I turned 65 my income would drop to just the $280 SSDI. This assumes I could maintain LTD payments from my insurance company, Something they were going to fight me on shamelessly.
The loss of 30% my income was a huge blow at first. Kate had been a stay at home mother for four years. After I went on disability, she went back to work. We effectually switched roles. I was now a stay at home Dad and she was working. But because of my insurance and SSDI, I was still he breadwinner. It was a strange situation.
July 4, 2013
A year ago today I noticed new eye problems that my surgeon later told me he couldn't correct. This set me on a new path.
July 15, 2013
Made another optical tech cry after my visual field test. The doctor should really warn them about me!
September 26, 2013
Going on disability was the right decision but walking away from my team goes against everything I know. It hurt my soul. The logic of the mind eats away at the decisions it made for itself. I miss work. I miss the prestige. I miss the action. I miss the thrill. I don't miss all the conference calls.
When I was working I was headed to an early grave. All the calories to jack me up to have my head in the game. Then not having time to work out or eat right. It created a circle of failure. Walking away from work broke the cycle. And probably saved me from a heart attack.
December 11, 2013
LTD Insurance company just called to tell me they've been Googling my activities. Guess it's their way of wishing me happy holidays. I hope they have video of me walking into the occasional tree. That happens all too frequently.
December 14, 2013
Blind man runs into wheelchair.
Part 22 is here.
December 2015
Spring of 2013. After six months, I moved from short term disability to long term disability and my insurance company requested that I signup for Social Security Disability. They paid for an outside firm to help submit my application. It normally takes two years to get approved for SSDI. My application was approved in 29 days. The government doesn't seem to see the need to fight visual impairment like they would other disabilities. It’s just a measurement to them.
My case worker from the Social Security Administration called and said that I should have my payments changed over into my wife’s name. I have no idea why she thought this was a good idea but I refused. The case worker seemed pretty upset that I didn’t do what they had told me. Story of my life, get in line. She then asked if I was the head of house. I told them I was. They said I could get money for my kids and I should submit an application for them. I sighed and told them to look at their computer because that application had already been submitted. Two weeks later my children’s application was approved.
My insurance policy with the bank said I should make 60% of my former salary plus bonuses. After SSDI. In reality, my state didn’t count my SSDI as income. This meant I made more like 70% of my former salary. Here ’s how my income would breakout over time, assuming I made $1,000 a year:
$280 - SSDI
$140 - SSDI for my children
$230 - LTD Insurance Policy
Total = $650
As my children turned 18 they would stop getting SSDI so my income would look like this:
$280 SSDI
$370 LTD insurance Policy
Total = $650
And when I turned 65 my income would drop to just the $280 SSDI. This assumes I could maintain LTD payments from my insurance company, Something they were going to fight me on shamelessly.
The loss of 30% my income was a huge blow at first. Kate had been a stay at home mother for four years. After I went on disability, she went back to work. We effectually switched roles. I was now a stay at home Dad and she was working. But because of my insurance and SSDI, I was still he breadwinner. It was a strange situation.
July 4, 2013
A year ago today I noticed new eye problems that my surgeon later told me he couldn't correct. This set me on a new path.
July 15, 2013
Made another optical tech cry after my visual field test. The doctor should really warn them about me!
September 26, 2013
Going on disability was the right decision but walking away from my team goes against everything I know. It hurt my soul. The logic of the mind eats away at the decisions it made for itself. I miss work. I miss the prestige. I miss the action. I miss the thrill. I don't miss all the conference calls.
When I was working I was headed to an early grave. All the calories to jack me up to have my head in the game. Then not having time to work out or eat right. It created a circle of failure. Walking away from work broke the cycle. And probably saved me from a heart attack.
December 11, 2013
LTD Insurance company just called to tell me they've been Googling my activities. Guess it's their way of wishing me happy holidays. I hope they have video of me walking into the occasional tree. That happens all too frequently.
December 14, 2013
Blind man runs into wheelchair.
Part 22 is here.
Thursday, December 17, 2015
Losing Well Part 8
Continuation of my series, Losing Well. Part 1 can be found here.
May, 2000
I decided that I just didn’t need to define myself as I always have or by value systems that I no longer hold. I don’t need to be dating to feel complete. I have all I need within myself. I am a whole person.
July, 2000
Division of the Blind just called to verify I’d gotten the job set up on my “employment plan.” When I went to them I was employed and I still am employed.
August, 2000
Vancouver Trip. Did Stanley Park, the shops in North Van. I hiked down a dam to a salmon spawning, crossed a suspension bridge over a waterfall. What a great city.
8 September 2000
Been a year since I drove a car. Wow. It still frustrates me that I’m stuck so much of the time. I asked the city about special transportation but they told me I had a job so I wouldn’t qualify. That made no sense to me.
29 September 2000
We went over to a bar and played some pool. We lost, but afterwards, I pulled out my cane. The look on their faces was priceless. I can be so mean.
5 October 2000
Today I found out that I’m divorced. Let the fun begin
6 October 2000
For about the third of fourth time that night some drunk guy asked me why I was faking being blind. I ended up actually explaining it to him and this girl. I got her number but I can’t remember anything about her.
7 October 2000
My friends had an invite to a someone's birthday party - someone I'd never met before. There were a lot of people at the party in a small house. I met this girl. She’s a scientist. We talked most of the night. I got her number.
8 October 2000
I was at a bar and I ran into this guy who loved my cane. “Hey, I gotta have one of those stick things.” What an idiot. Sure no problem guy, let me give you RP then see how much you gotta have one.
9 October 2000
Before I knew about RP I had all the mobility that I needed. Yet I was trapped. Now, I'm free and I no longer have mobility. I traded one form of slavery for another. But my slavery now is one of convenience. Life is not defined by your physical attributes unless you let it be.
12 October 2000
Went out with the scientist, Kate. She has some strange/exotic/cool tastes in music. I like that.
16 October 2000
Wild ride, the movie, Dancing in the Dark. It's a kick in the ass. In it, Bjork plays a mother who willingly allows herself to be hung to death in order for her son to be able to pay for an operation to keep his eyesight. I got physically sick when I realized what it was about. Talk about a slap in the face.
The movie is clearly intended to be anti-capital punishment. Their means are just very upsetting. Came back home and Mom called me with news about some miracle drug that will help my eyesight. It was not what I needed. Why can’t people accept blindness? What's the big deal? If my eyesight is understood to be worth someone else's life, what does that say about me who will lose it? Is my life not valuable without eyesight? I think it is.
18 October 2000
Kate called. We had a good conversation. I really like her. Even if nothing would ever work out between us, I hope we can become friends. She wants to hangout next week sometime.
27 October 2000
Was out with friends downtown. I was walking down the sidewalk when this woman and her friends jumped out of a limo dressed in rave gear. I got out of their way on the sidewalk. The woman held out her hand and said, “you’re not blind.” I couldn’t see her hand and she slapped me across the face.I was too shocked to do much. My friends yelled at her. I was like, what just happened?
9 October 2000
Turned down a job. It paid more but I had no reliable way to get there. Damn RP.
11 October 2000
Kate came and got me around dinner time. Went out on the dance floor. With RP it’s like dancing in the dark by myself. Less fear that way.
17 October 2000
Another department at the bank is offering me more money for less responsibility. How often does that combination happen? My boss is really pushing for me to stay. What do I do? She took a risk on me two and a half years ago. Should I take a risk with her now? I like the stability of the new job and the money but is it good for my career? With RP, should my ego play an y part? My gut is to stay with my boss.
20 October 2000
Made the decision that I’m going to stick with the job. Sigh. Bye bye money. Did I do right? Will I ever know?
22 October 2000
I’m in a rut. I depend too much on going out to have fun. I‘m not dealing with things in the “right” way. It’s just hard for me now. Everything is in flux all the time
27 October 2000
I got to work and my boss called me into her office. She told me that I got nice race. Much more then what I turned down last week!
17 November 2000
The girls love to steal my cane when I’m on the dance floor. Which I don’t really mind. It's fun trying to get it back. It’s the guys I don’t like. The ones who try to run me over with their cars to see if I’ll jump out of the way. Or when they honk their horns and yell out. “you faker.” They're right. I am a faker. I'm just not sure what I’m faking anymore.
9 December 2000
Kate came over. We drank coffee then went over and walked around. I bought her a pair of sunglasses for her birthday. Made her happy. She dropped me off about 4:30 because she had to go to dinner with her parents for her birthday. About an hour after she left, she called me to see if I wanted to go out that night. I was like, sure.
16 December 2000
Cleaned up a bit. Big date planned with Kate. When she got here I just sensed that things had changed between us. I grabbed her hand on the walk to the show and she didn’t let go. Really enjoyed the play. On the way back we kissed in the rain in the graveyard beside my condo. I popped the umbrella over our head just as our lips met. I crack myself up sometimes. So Kate is now my girlfriend. I was all prepared to wine and dine her into submission but she came with her own plans.
December 2015
2000 was my first full year with RP. In the spring of that year I traveled to Johns Hopkins in Baltimore to get a definitive diagnosis. They told me that I probably had ten years of “useable” vision left. That started a clock for me. I felt motivated to see as much of the world as possible in my time left. I threw myself into going out, travel and trying to experience the world as much as possible.
I used RP as a catalyst to reshape myself. I decided I was going to be successful because it was hard. Because the sighted world saw me as incapable. I wanted to beat them at their own game. My reinvention led to getting a new circle of friends, a girlfriend and buying he first piece of real estate I’d ever owned.
RP also exposed to frustrating limitations. I wasn’t able to take a fantastic new job because I couldn’t get transportation. I was also learning how to use the cane in public. The results were mixed. My cane and limited vision confused everyone. Sometimes even myself. If I pretended to be sighted I’d end up acting strange when I couldn’t see. When I used my cane, I got a lot of unwanted attention or people were confused when I still showed some visual ability. It’s a dilemma with no good choices.
Part 9 can be found here.
May, 2000
I decided that I just didn’t need to define myself as I always have or by value systems that I no longer hold. I don’t need to be dating to feel complete. I have all I need within myself. I am a whole person.
July, 2000
Division of the Blind just called to verify I’d gotten the job set up on my “employment plan.” When I went to them I was employed and I still am employed.
August, 2000
Vancouver Trip. Did Stanley Park, the shops in North Van. I hiked down a dam to a salmon spawning, crossed a suspension bridge over a waterfall. What a great city.
8 September 2000
Been a year since I drove a car. Wow. It still frustrates me that I’m stuck so much of the time. I asked the city about special transportation but they told me I had a job so I wouldn’t qualify. That made no sense to me.
29 September 2000
We went over to a bar and played some pool. We lost, but afterwards, I pulled out my cane. The look on their faces was priceless. I can be so mean.
5 October 2000
Today I found out that I’m divorced. Let the fun begin
6 October 2000
For about the third of fourth time that night some drunk guy asked me why I was faking being blind. I ended up actually explaining it to him and this girl. I got her number but I can’t remember anything about her.
7 October 2000
My friends had an invite to a someone's birthday party - someone I'd never met before. There were a lot of people at the party in a small house. I met this girl. She’s a scientist. We talked most of the night. I got her number.
8 October 2000
I was at a bar and I ran into this guy who loved my cane. “Hey, I gotta have one of those stick things.” What an idiot. Sure no problem guy, let me give you RP then see how much you gotta have one.
9 October 2000
Before I knew about RP I had all the mobility that I needed. Yet I was trapped. Now, I'm free and I no longer have mobility. I traded one form of slavery for another. But my slavery now is one of convenience. Life is not defined by your physical attributes unless you let it be.
12 October 2000
Went out with the scientist, Kate. She has some strange/exotic/cool tastes in music. I like that.
16 October 2000
Wild ride, the movie, Dancing in the Dark. It's a kick in the ass. In it, Bjork plays a mother who willingly allows herself to be hung to death in order for her son to be able to pay for an operation to keep his eyesight. I got physically sick when I realized what it was about. Talk about a slap in the face.
The movie is clearly intended to be anti-capital punishment. Their means are just very upsetting. Came back home and Mom called me with news about some miracle drug that will help my eyesight. It was not what I needed. Why can’t people accept blindness? What's the big deal? If my eyesight is understood to be worth someone else's life, what does that say about me who will lose it? Is my life not valuable without eyesight? I think it is.
18 October 2000
Kate called. We had a good conversation. I really like her. Even if nothing would ever work out between us, I hope we can become friends. She wants to hangout next week sometime.
27 October 2000
Was out with friends downtown. I was walking down the sidewalk when this woman and her friends jumped out of a limo dressed in rave gear. I got out of their way on the sidewalk. The woman held out her hand and said, “you’re not blind.” I couldn’t see her hand and she slapped me across the face.I was too shocked to do much. My friends yelled at her. I was like, what just happened?
9 October 2000
Turned down a job. It paid more but I had no reliable way to get there. Damn RP.
11 October 2000
Kate came and got me around dinner time. Went out on the dance floor. With RP it’s like dancing in the dark by myself. Less fear that way.
17 October 2000
Another department at the bank is offering me more money for less responsibility. How often does that combination happen? My boss is really pushing for me to stay. What do I do? She took a risk on me two and a half years ago. Should I take a risk with her now? I like the stability of the new job and the money but is it good for my career? With RP, should my ego play an y part? My gut is to stay with my boss.
20 October 2000
Made the decision that I’m going to stick with the job. Sigh. Bye bye money. Did I do right? Will I ever know?
22 October 2000
I’m in a rut. I depend too much on going out to have fun. I‘m not dealing with things in the “right” way. It’s just hard for me now. Everything is in flux all the time
27 October 2000
I got to work and my boss called me into her office. She told me that I got nice race. Much more then what I turned down last week!
17 November 2000
The girls love to steal my cane when I’m on the dance floor. Which I don’t really mind. It's fun trying to get it back. It’s the guys I don’t like. The ones who try to run me over with their cars to see if I’ll jump out of the way. Or when they honk their horns and yell out. “you faker.” They're right. I am a faker. I'm just not sure what I’m faking anymore.
9 December 2000
Kate came over. We drank coffee then went over and walked around. I bought her a pair of sunglasses for her birthday. Made her happy. She dropped me off about 4:30 because she had to go to dinner with her parents for her birthday. About an hour after she left, she called me to see if I wanted to go out that night. I was like, sure.
16 December 2000
Cleaned up a bit. Big date planned with Kate. When she got here I just sensed that things had changed between us. I grabbed her hand on the walk to the show and she didn’t let go. Really enjoyed the play. On the way back we kissed in the rain in the graveyard beside my condo. I popped the umbrella over our head just as our lips met. I crack myself up sometimes. So Kate is now my girlfriend. I was all prepared to wine and dine her into submission but she came with her own plans.
December 2015
2000 was my first full year with RP. In the spring of that year I traveled to Johns Hopkins in Baltimore to get a definitive diagnosis. They told me that I probably had ten years of “useable” vision left. That started a clock for me. I felt motivated to see as much of the world as possible in my time left. I threw myself into going out, travel and trying to experience the world as much as possible.
I used RP as a catalyst to reshape myself. I decided I was going to be successful because it was hard. Because the sighted world saw me as incapable. I wanted to beat them at their own game. My reinvention led to getting a new circle of friends, a girlfriend and buying he first piece of real estate I’d ever owned.
RP also exposed to frustrating limitations. I wasn’t able to take a fantastic new job because I couldn’t get transportation. I was also learning how to use the cane in public. The results were mixed. My cane and limited vision confused everyone. Sometimes even myself. If I pretended to be sighted I’d end up acting strange when I couldn’t see. When I used my cane, I got a lot of unwanted attention or people were confused when I still showed some visual ability. It’s a dilemma with no good choices.
Part 9 can be found here.
Wednesday, December 16, 2015
Losing Well Part 6
Continuation of my series, Losing Well. Part 1 can be found here.
3 September 1999
To Whom It May Concern,
Mr. Mayhew is a client of the state Division of the Blind [and is] seeking help with mobility issues which are a result of his retinitis pigmentosa. He does have retinitis pigmentosa and does have severe restrictions in his visual fields.
Individualized Plan for Employment
This is my individualized plan for employment. I have been provided with opportunities to participate and make informed choices in my vocational goal, services, service providers and ways to get services. The employment goal is should be met by 6/2000. These are the services needed to meet my employment goal:
Services needed: Mobility Services
Beginning Date: 9/99
Who will pay for service: Division of the Blind
Services needed: Guidance and Counseling about adjustment to blindness
Beginning date: 9/99
Who will pay for service: Division of the Blind.
3 September 1999
The wife and I have come to an agreement about the stuff. I’m starting over. But that’s okay. My friends are going to help me move all that’s left. I’m looking forward to it! I think that this is one of the best things that could happen to me.
4 September 1999
Things are crazy here. I got the separation papers from wife. Trying to pack. I met my case worker. She was nice but the documentation they have you fill out is so insulting. It’s like I’m going blind on purpose just so i can milk the state.
10 September 1999
I moved to an apartment 4 blocks from work. I moved in with nothing more than my clothes and a sleeping bag. I let her have everything. Stopped driving.
21 October 1999
I’m supposed to run sound for a band tonight. I don't know if I told you or not but I started using a cane. I really think this is a good thing. Finally got furniture for the apartment.
9 November 1999
When I started emailing you I was married, drove and lived in a house in the country. Now I use a cane, live in an apartment in the heart of the city with all new stuff and I’m separated from my wife. It has only been six months! I look around sometimes and wonder how the hell I got here. But in many ways, I’m happier.
27 December 1999
Sorry it has been so long. Got really busy at work. All this month I have been putting in 60+ hour weeks. I’m buying a condo! It’s right across from the park and about 2 blocks from work.
December 2015
Somehow I survived 1999, my year of upheaval. Everything I knew came crashing down. I was very numb during this whole process. I kept busy working. I was lucky to have a job. It kept me going and allowed me to afford to live downtown. In the space of a year, I’d morphed from a home body married man into a work hard/play hard single man. The transformation left me dizzy.
Another big change in 1999 was using a white cane. The cane is a symbol and it identified me as disabled. I needed to use it to get around and let others know that I needed help getting around. But I had a hard time admitting my weakness to the world. I didn't like being needy.
Towards the end of 1999, I started seeing a therapist. She was worried that I’d slipped into a situational depression. She told me that what I needed was grief counseling for losing my eyesight. She encouraged me to start dating again.
Part 7 can be found here.
3 September 1999
To Whom It May Concern,
Mr. Mayhew is a client of the state Division of the Blind [and is] seeking help with mobility issues which are a result of his retinitis pigmentosa. He does have retinitis pigmentosa and does have severe restrictions in his visual fields.
Individualized Plan for Employment
This is my individualized plan for employment. I have been provided with opportunities to participate and make informed choices in my vocational goal, services, service providers and ways to get services. The employment goal is should be met by 6/2000. These are the services needed to meet my employment goal:
Services needed: Mobility Services
Beginning Date: 9/99
Who will pay for service: Division of the Blind
Services needed: Guidance and Counseling about adjustment to blindness
Beginning date: 9/99
Who will pay for service: Division of the Blind.
3 September 1999
The wife and I have come to an agreement about the stuff. I’m starting over. But that’s okay. My friends are going to help me move all that’s left. I’m looking forward to it! I think that this is one of the best things that could happen to me.
4 September 1999
Things are crazy here. I got the separation papers from wife. Trying to pack. I met my case worker. She was nice but the documentation they have you fill out is so insulting. It’s like I’m going blind on purpose just so i can milk the state.
10 September 1999
I moved to an apartment 4 blocks from work. I moved in with nothing more than my clothes and a sleeping bag. I let her have everything. Stopped driving.
21 October 1999
I’m supposed to run sound for a band tonight. I don't know if I told you or not but I started using a cane. I really think this is a good thing. Finally got furniture for the apartment.
9 November 1999
When I started emailing you I was married, drove and lived in a house in the country. Now I use a cane, live in an apartment in the heart of the city with all new stuff and I’m separated from my wife. It has only been six months! I look around sometimes and wonder how the hell I got here. But in many ways, I’m happier.
27 December 1999
Sorry it has been so long. Got really busy at work. All this month I have been putting in 60+ hour weeks. I’m buying a condo! It’s right across from the park and about 2 blocks from work.
December 2015
Somehow I survived 1999, my year of upheaval. Everything I knew came crashing down. I was very numb during this whole process. I kept busy working. I was lucky to have a job. It kept me going and allowed me to afford to live downtown. In the space of a year, I’d morphed from a home body married man into a work hard/play hard single man. The transformation left me dizzy.
Another big change in 1999 was using a white cane. The cane is a symbol and it identified me as disabled. I needed to use it to get around and let others know that I needed help getting around. But I had a hard time admitting my weakness to the world. I didn't like being needy.
Towards the end of 1999, I started seeing a therapist. She was worried that I’d slipped into a situational depression. She told me that what I needed was grief counseling for losing my eyesight. She encouraged me to start dating again.
Part 7 can be found here.
Tuesday, December 15, 2015
Losing Well Part 5
Continuation of my series, Losing Well. Part 1 can be found here.
1 August 1999
My employer hired an outside company to help its employees deal with future planning and they are calling me today to go over Long Term Disability and SSDI.
3 August 1999
I had the test, but no test results. My doctor is out of town until next week. He originally had me take a 60 degree threshold test which he now thinks was too broad to determine how many degrees I still have. So I went back and took the 2-30 degree test. The test doesn't tell you how many degrees but it does print out a map of what I can see. I’ll be surprised if I have more than 15 degrees in my left eye and more than 10 in my right. Total guess work at this point. Find out next week. I guess that would make me legally blind. Wait and see.
6 August 1999
I went to counseling. Oh boy. I told her all of the things that I have been telling you. It kinda felt good to get it all out. But she got really upset. I honestly don't think that she thought her actions had their own effect on our situation. So all of my hurt and anger is out there now.
7 August 1999
I met with the guy at work who is blind. He was born without eyes. He told me that he thinks I’m in a tougher place because I know what it’s like to see. I live in that gray in-between world of the half-sighted.
8 August 1999
A friend called me. I will be running sound for a band tonight at a art gallery/night club. My life has changed so much since my wife left. I never would have done half of this stuff before
19 August 1999
The marriage counselor just called. My wife has decided to stop counseling. I’m not sure what this means exactly. I have called her house and no one answers. I don't know if this means she wants a separation or what. Needless to say, I am a little upset.
21 August 1999
Will I come out a stronger person? I don't know.
22 August 22, 1999
I find out tomorrow if I am legally blind. Nervous. I need a vacation
23 August 1999
Wife just called. She wants to separate our possessions.
23 August 1999
Turns out I find out tomorrow if I am legally blind. If I am, I have to stop driving and move to were I can get to public transportation. My marriage counselor called to say that my wife wants to stop counseling and she called me today to say that we need to separate our possessions. That is about it though.
24 August 1999
Found out today I’m legally blind. I have less than 20 degrees if vision. Also met with Division of the Blind today.
26 August 1999
I cannot seem to feel anything. Like I am a spectator in my own life.
29 August 1999
I found an apartment.
30 August 1999
I got a really cool apartment 4 blocks from work. Getting legally separated. Stop driving soon and that is going to be a shock to the system. I have a case worker at Division of the Blind now. Start cane training pretty soon. Life is moving real fast here.
Part 6 can be found here.
1 August 1999
My employer hired an outside company to help its employees deal with future planning and they are calling me today to go over Long Term Disability and SSDI.
3 August 1999
I had the test, but no test results. My doctor is out of town until next week. He originally had me take a 60 degree threshold test which he now thinks was too broad to determine how many degrees I still have. So I went back and took the 2-30 degree test. The test doesn't tell you how many degrees but it does print out a map of what I can see. I’ll be surprised if I have more than 15 degrees in my left eye and more than 10 in my right. Total guess work at this point. Find out next week. I guess that would make me legally blind. Wait and see.
6 August 1999
I went to counseling. Oh boy. I told her all of the things that I have been telling you. It kinda felt good to get it all out. But she got really upset. I honestly don't think that she thought her actions had their own effect on our situation. So all of my hurt and anger is out there now.
7 August 1999
I met with the guy at work who is blind. He was born without eyes. He told me that he thinks I’m in a tougher place because I know what it’s like to see. I live in that gray in-between world of the half-sighted.
8 August 1999
A friend called me. I will be running sound for a band tonight at a art gallery/night club. My life has changed so much since my wife left. I never would have done half of this stuff before
19 August 1999
The marriage counselor just called. My wife has decided to stop counseling. I’m not sure what this means exactly. I have called her house and no one answers. I don't know if this means she wants a separation or what. Needless to say, I am a little upset.
21 August 1999
Will I come out a stronger person? I don't know.
22 August 22, 1999
I find out tomorrow if I am legally blind. Nervous. I need a vacation
23 August 1999
Wife just called. She wants to separate our possessions.
23 August 1999
Turns out I find out tomorrow if I am legally blind. If I am, I have to stop driving and move to were I can get to public transportation. My marriage counselor called to say that my wife wants to stop counseling and she called me today to say that we need to separate our possessions. That is about it though.
24 August 1999
Found out today I’m legally blind. I have less than 20 degrees if vision. Also met with Division of the Blind today.
26 August 1999
I cannot seem to feel anything. Like I am a spectator in my own life.
29 August 1999
I found an apartment.
30 August 1999
I got a really cool apartment 4 blocks from work. Getting legally separated. Stop driving soon and that is going to be a shock to the system. I have a case worker at Division of the Blind now. Start cane training pretty soon. Life is moving real fast here.
Part 6 can be found here.
Thursday, October 8, 2015
Don't Pretend
My disability insurance company called yesterday. Their vocational rehab coordinator wanted to make sure that the State had scheduled me for an evaluation. I told her that they had. She then launched into a long winded, chipper, explanation about how great vocational rehab will be in helping me learn new skills and get a new job.
I told her that I'd been dealing with my disability for sixteen years and I doubted there was adaptive technology that I didn't know about. What I wanted to tell her was, "Stop pretending this is for my benefit! You're forcing me to attend rehab in hopes that you'll move me off your books." That's it. That's all this is about - money.
My insurance company knows that, as a white collar worker for the better part of two decades, I'd rather die than go work a job I consider beneath my dignity. I'm not calling out people who have those jobs, especially not visually impaired and blind people. I just can't do it. My insurance company wants to force me to a decision point where I turn down 23 years of future payouts because I won't humble myself to work at Taco Bell.
In the meantime, SSDI is paying me specifically to be a caretaker to my children. My insurance company wants me to take part of my meager funds to have someone else watch my kids. Money that I won't make up working.
I have no idea how these people sleep at night.
I told her that I'd been dealing with my disability for sixteen years and I doubted there was adaptive technology that I didn't know about. What I wanted to tell her was, "Stop pretending this is for my benefit! You're forcing me to attend rehab in hopes that you'll move me off your books." That's it. That's all this is about - money.
My insurance company knows that, as a white collar worker for the better part of two decades, I'd rather die than go work a job I consider beneath my dignity. I'm not calling out people who have those jobs, especially not visually impaired and blind people. I just can't do it. My insurance company wants to force me to a decision point where I turn down 23 years of future payouts because I won't humble myself to work at Taco Bell.
In the meantime, SSDI is paying me specifically to be a caretaker to my children. My insurance company wants me to take part of my meager funds to have someone else watch my kids. Money that I won't make up working.
I have no idea how these people sleep at night.
Tuesday, October 6, 2015
Canes and Cruises
Back in July, we went on our first cruise. It departed from Vancouver and went up the Inside Passage and through the panhandle of Alaska. It was amazing and inspiring. For the purposes of this blog, I want to talk about the reactions I got while using my cane on a cruise ship.
I think there were over two thousand passengers on the ship and a couple of other people using canes. I was using my cane on a staircase and passed one of the other cane users. I heard a Father lean over to his daughter and ask in a loud whisper, "why do they think they need those sticks on this ship?" Not sure what he even meant by that. That the ship was a safe environment so canes aren't unnecessary? Or something more judgemental? As rude comments about my cane go, it was pretty minor.
Later on, I was walking through part of the outside deck that doubles as a track. A teenager was jogging towards me and I moved out of her way. Her father chased her down and yelled at her for not looking out for me. It was odd to me because I'd obviously gotten out of her way without issue. I felt bad for her.
In general, the people on the curse ship seemed pretty rude. I'll compare how they treated me using an airport as a control. In a busy airport, people will get out of my way, help if I need it. On the cruise ship, everyone was on vacation and didn't seem to care about politeness. They'd run into me and just keep going. I'd hit them with my cane on accident and they'd get upset. Cruise ships are a tough crowd.
I've said it before, using a cane is an ongoing sociology experiment. Cane users have to put up with people's need to help you and their preconceived ideas. They often don't understand the half-sighted world. As a visually impaired person, I end up having to educate people even though I hate having to do it and don't want that role. Such is the life for the VIP.
I think there were over two thousand passengers on the ship and a couple of other people using canes. I was using my cane on a staircase and passed one of the other cane users. I heard a Father lean over to his daughter and ask in a loud whisper, "why do they think they need those sticks on this ship?" Not sure what he even meant by that. That the ship was a safe environment so canes aren't unnecessary? Or something more judgemental? As rude comments about my cane go, it was pretty minor.
Later on, I was walking through part of the outside deck that doubles as a track. A teenager was jogging towards me and I moved out of her way. Her father chased her down and yelled at her for not looking out for me. It was odd to me because I'd obviously gotten out of her way without issue. I felt bad for her.
In general, the people on the curse ship seemed pretty rude. I'll compare how they treated me using an airport as a control. In a busy airport, people will get out of my way, help if I need it. On the cruise ship, everyone was on vacation and didn't seem to care about politeness. They'd run into me and just keep going. I'd hit them with my cane on accident and they'd get upset. Cruise ships are a tough crowd.
I've said it before, using a cane is an ongoing sociology experiment. Cane users have to put up with people's need to help you and their preconceived ideas. They often don't understand the half-sighted world. As a visually impaired person, I end up having to educate people even though I hate having to do it and don't want that role. Such is the life for the VIP.
Monday, October 5, 2015
Heathrow Cracks Down on Disabled
On a recent trip to France, I had to go through London's Heathrow airport. What a disaster that place is for disabled people. If you don't want help. The way assistance works at airports is that if you want assistance, you request it on your plane ticket. I never do that. During my flight, British Airways radioed Heathrow to tell them I needed assistance. So when I got off a plane they put me on a cart and drove me under the terminals in tunnels that look right out of a Doctor Who episode. The cart certainly made my trip faster. But I didn't actually require it.
After customs, I was led to a disabled waiting room. My next flight had yet to be assigned a gate. My plane ticket was taken by a Heathrow rep and I was told to wait until I could be assisted to my gate. I was really uncomfortable by this point. I hadn't requested help and now my plane ticket had been taken. I wanted to go shopping, get a coffee. It was 1AM to me and I was tired and confused about what was going on. Maybe I could have demanded my ticket back and left. At the time, it felt like I'd been locked up for my own protection. Eventually, one of my brother's texted me and I told him to come fetch me. I felt embarrassed and incapable when my brothers showed up to rescue me.
My treatment reminded me of being a tourist in London a few years ago. I went to the Tower Bridge with my brother. The attendant wouldn't let my brother pay because he was my "caretaker." Which is so insulting. My reaction to her was that no, I'm his caretaker. Oddly, he got in free but I had to pay. There's just something off with how disabled people are treated in the UK.
A week later, I was more prepared for my connecting flight through Heathrow. I learned the magic words to tell British Airways to leave me alone, "I'm traveling with family." So there was no one at the airport prepped to fetch me. I did have to turn down help from all the staff I met, which was annoying. I was able to get on a bus and make my way to Terminal 5, without help, thank you very much. I made my way to security where everything went pear shaped. Security refused to let me into the terminal without an escort. They actually told me that it was against policy for a blind person to walk through the terminal unassisted. That struck me as probably not true but I didn't have a choice. The guard took himself off the line to "assist" me. How many passengers were delayed because he was gone? Who wasn't assisted who needed it more than me?
Over the next hour, the security guard acted as my personal Sherpa. He helped me pick out a toy for my son. We went to the pharmacy. He carried my shopping bags. And I made him follow me into a pub and wait with me while I drank a pint. He was a nice guy and we had a frank conversation about disability. I told him that while in France, or Canada or the US, if I needed help I could request it. If I told the staff that I could do it, I was left alone. At Heathrow, it was assumed that I couldn't do anything and it was hard not to be insulted by that. My minder told me to send Heathrow an email.
After I got home, I sent that email to Heathrow. A representative from BAA plc, the company that runs Heathrow, contacted me. He asked me what the best time to reach me would be. I replied with times and my email was bounced back by BAA's servers has a violation of their email policy. You can't make this stuff up. BAA eventually got a hold of me on the phone. The rep apologized and said that my treatment at Heathrow was a violation of their policy. As I had suspected, the disability policy had been put together with the assistance of blind organizations in the UK. Self determination for the disabled is specific part of their policy that the staff had received training on. As soon as I told them that I wanted to be left alone, that's exactly what they should have done.
I told the rep that if you tell a disabled person that they can't do something because of their disability, that's a form of discrimination. The rep agreed and told me to contact him next time I'm flying through Heathrow. Which doesn't sound like much of a policy. He did say that he'd be contacting the "contractors" in Terminal 5 about my treatment. The management at BAA and the staff are clearly working on different incentives.
There have been several scandals in the past couple of years over the poor treatment of disabled persons at Heathrow. I suspect the staff is more afraid of their line managers seeing a blind person unassisted than they are in following their policy. They were trying to head off scandal by helping me, whether I want help or not. The staff needs to be corrected. The reason why airports rely upon the self reporting system for assistance is that there are almost always more people that need help that staff available. The system breaks down if people who don't want assistance have it forced on them. At the same time, I don't want my story to cause other people not to be helped who need it.
I posted my story to the United Kingdom forum on Reddit. The reaction was typical Reddit in someways. I got a lot of criticism for being a fat, ugly American. For being spoiled and ungrateful. They missed the point that in requesting to be left alone, I'm freeing the staff to help someone else who actually needs it. Also they didn't understand the emotional impact that being treated like a child has on someone with a disability.
After customs, I was led to a disabled waiting room. My next flight had yet to be assigned a gate. My plane ticket was taken by a Heathrow rep and I was told to wait until I could be assisted to my gate. I was really uncomfortable by this point. I hadn't requested help and now my plane ticket had been taken. I wanted to go shopping, get a coffee. It was 1AM to me and I was tired and confused about what was going on. Maybe I could have demanded my ticket back and left. At the time, it felt like I'd been locked up for my own protection. Eventually, one of my brother's texted me and I told him to come fetch me. I felt embarrassed and incapable when my brothers showed up to rescue me.
My treatment reminded me of being a tourist in London a few years ago. I went to the Tower Bridge with my brother. The attendant wouldn't let my brother pay because he was my "caretaker." Which is so insulting. My reaction to her was that no, I'm his caretaker. Oddly, he got in free but I had to pay. There's just something off with how disabled people are treated in the UK.
A week later, I was more prepared for my connecting flight through Heathrow. I learned the magic words to tell British Airways to leave me alone, "I'm traveling with family." So there was no one at the airport prepped to fetch me. I did have to turn down help from all the staff I met, which was annoying. I was able to get on a bus and make my way to Terminal 5, without help, thank you very much. I made my way to security where everything went pear shaped. Security refused to let me into the terminal without an escort. They actually told me that it was against policy for a blind person to walk through the terminal unassisted. That struck me as probably not true but I didn't have a choice. The guard took himself off the line to "assist" me. How many passengers were delayed because he was gone? Who wasn't assisted who needed it more than me?
Over the next hour, the security guard acted as my personal Sherpa. He helped me pick out a toy for my son. We went to the pharmacy. He carried my shopping bags. And I made him follow me into a pub and wait with me while I drank a pint. He was a nice guy and we had a frank conversation about disability. I told him that while in France, or Canada or the US, if I needed help I could request it. If I told the staff that I could do it, I was left alone. At Heathrow, it was assumed that I couldn't do anything and it was hard not to be insulted by that. My minder told me to send Heathrow an email.
After I got home, I sent that email to Heathrow. A representative from BAA plc, the company that runs Heathrow, contacted me. He asked me what the best time to reach me would be. I replied with times and my email was bounced back by BAA's servers has a violation of their email policy. You can't make this stuff up. BAA eventually got a hold of me on the phone. The rep apologized and said that my treatment at Heathrow was a violation of their policy. As I had suspected, the disability policy had been put together with the assistance of blind organizations in the UK. Self determination for the disabled is specific part of their policy that the staff had received training on. As soon as I told them that I wanted to be left alone, that's exactly what they should have done.
I told the rep that if you tell a disabled person that they can't do something because of their disability, that's a form of discrimination. The rep agreed and told me to contact him next time I'm flying through Heathrow. Which doesn't sound like much of a policy. He did say that he'd be contacting the "contractors" in Terminal 5 about my treatment. The management at BAA and the staff are clearly working on different incentives.
There have been several scandals in the past couple of years over the poor treatment of disabled persons at Heathrow. I suspect the staff is more afraid of their line managers seeing a blind person unassisted than they are in following their policy. They were trying to head off scandal by helping me, whether I want help or not. The staff needs to be corrected. The reason why airports rely upon the self reporting system for assistance is that there are almost always more people that need help that staff available. The system breaks down if people who don't want assistance have it forced on them. At the same time, I don't want my story to cause other people not to be helped who need it.
I posted my story to the United Kingdom forum on Reddit. The reaction was typical Reddit in someways. I got a lot of criticism for being a fat, ugly American. For being spoiled and ungrateful. They missed the point that in requesting to be left alone, I'm freeing the staff to help someone else who actually needs it. Also they didn't understand the emotional impact that being treated like a child has on someone with a disability.
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