As I'm rounding out year four of being subject to "the system", I've had a lot of time to reflect over past actions, current consequences, and possible future outcomes.
I'm not so crass as to imply that I rate status with Robert Burgdorf or Crystal Lee Sutton *1 - however I feel that while the world is not fair, it should be just *2. I look back at what I have dealt with and realize that, yes, there was an easier road; I just wouldn't have been able to look myself in the mirror every morning. Never-the-less it has been a trying four years with at least two more ahead of me. I'm tired, disheartened, and - unfortunatly - now lack belief in the systems designed to protect the average person [let alone the "special needs" individual].
There are many others, who are legitimately trampled on by a system which is broken, and many do not fight back because they have seen the fall of those who do. Or maybe it is because they know they need to keep paying for that roof over their head or that food on the table. This does not make them weak or stupid anymore than my fighting makes me strong or smart - or really vice-versa. Sometimes I look back and wonder if I really made the right choice.
I started fighting for my rights under the ADA so that I could maintain stable employment which would allow me to live on my own and care for myself. I also wanted to avoid disciplinary actions based on difficulty working the same as everyone else because of my "diffability." [No, I do not have a strange speech impediment I just borrowed this from Ollibean] I didn't really do either of those. I do not write this to support a fight for what is right or to condone those who do not - I merely seek to reflect on what I have been through/am going through and take a deeper look at the broken system and why it is broken.
My hypothesis is that people with "invisible" disabilities are easier for employers to let [or intentionally force] "slip through the cracks" and ultimately mistreat the most *3.
Lack of understanding or knowledge [and sometimes the subsequent stupidity] leads to friction with coworkers and management (read as harassment) instead of support. This friction complicates things by making it more-likely that attempts made to appeal to the next supervisory level fall upon the ears of people who have already been influenced by the opinions of people who, quite frankly, have no idea what they're talking about. It also makes it harder to connect and maintain connections with other coworkers.
It doesn't get any easier when you struggle for your rights, only to find that none of the entities put in place to protect those rights can work efficiently or even with any weight behind their decisions (when the decision is in your favor). My posts labeled as "Ms.Management" will address some of these issues. Unfortunately, due to the nature of what I'm going through, some of the specifics (agencies, etc.) will not be detailed and some posts may be more general until a later date. Even so, I hope these posts may eventually serve to be a source of encouragement, information, and possibly just to let others know that they are not alone in this struggle.
*Resources/Additional Information:
1. Robert Burgdorf wrote the Americans with Disabilities Act (more info here) and Crystal Lee Sutton started a union in North Carolina (you may know the movie version - Norma Rae) and you can find out more (here - website for her archive)
2. In my mind - fair would equate to all of us experiencing the same limitations and needing the same accommodations/considerations. Obviously that's not realistic. Just is that we all experience different limitations and therefore have differing accommodations/considerations but the process is still just - maybe not as perceived by people who do not understand. This is difficult as people tend to complain when they feel like someone is getting special treatment - they just don't understand the other side of it. If I have an office to myself and you think that's crap maybe you should try living a few days where every noise, sensation, light, or smell is either magnified till it's unbearable or dulled until it's nonexistent randomly throughout your day and we'll see how long before you trade you're shared office for other aspects of my life. Having said that - I wouldn't trade aspects of who I am or why in order to avoid the sensory issues - They are mine and you cannot have them. Remove them and you remove aspects of me. Sometimes you can do really cool things with the senses and if everybody else would let me manage my own life, they wouldn't go biggeldy-puck all the time. (biggeldy-puck has just won a place as a label, welcome aboard!)
3. If Jim has a colostomy bag - everyone can see that, even if they don't understand what it means for Jim's quality of life. If Jenny has carpal tunnel - everyone can see "evidence" of that and may have a limited understanding of what that means for her. [I must note that many people's knowledge of certain health problems - like carpal tunnel - is stinted and based on idiotic assumptions. ie: Jenny has carpal tunnel. Jenny needs to wear wrist braces. Not wearing wrist braces means Jenny either doesn't have carpal tunnel or that her carpal tunnel isn't bad or isn't bothering her. <- this is idiotic thinking based on a false assumption regarding wrist braces - which actually cause more harm to the carpal tunnel than good - as they can place pressure on the tunnel, compounding the problem.]
I'm not so crass as to imply that I rate status with Robert Burgdorf or Crystal Lee Sutton *1 - however I feel that while the world is not fair, it should be just *2. I look back at what I have dealt with and realize that, yes, there was an easier road; I just wouldn't have been able to look myself in the mirror every morning. Never-the-less it has been a trying four years with at least two more ahead of me. I'm tired, disheartened, and - unfortunatly - now lack belief in the systems designed to protect the average person [let alone the "special needs" individual].
There are many others, who are legitimately trampled on by a system which is broken, and many do not fight back because they have seen the fall of those who do. Or maybe it is because they know they need to keep paying for that roof over their head or that food on the table. This does not make them weak or stupid anymore than my fighting makes me strong or smart - or really vice-versa. Sometimes I look back and wonder if I really made the right choice.
I started fighting for my rights under the ADA so that I could maintain stable employment which would allow me to live on my own and care for myself. I also wanted to avoid disciplinary actions based on difficulty working the same as everyone else because of my "diffability." [No, I do not have a strange speech impediment I just borrowed this from Ollibean] I didn't really do either of those. I do not write this to support a fight for what is right or to condone those who do not - I merely seek to reflect on what I have been through/am going through and take a deeper look at the broken system and why it is broken.
My hypothesis is that people with "invisible" disabilities are easier for employers to let [or intentionally force] "slip through the cracks" and ultimately mistreat the most *3.
Lack of understanding or knowledge [and sometimes the subsequent stupidity] leads to friction with coworkers and management (read as harassment) instead of support. This friction complicates things by making it more-likely that attempts made to appeal to the next supervisory level fall upon the ears of people who have already been influenced by the opinions of people who, quite frankly, have no idea what they're talking about. It also makes it harder to connect and maintain connections with other coworkers.
It doesn't get any easier when you struggle for your rights, only to find that none of the entities put in place to protect those rights can work efficiently or even with any weight behind their decisions (when the decision is in your favor). My posts labeled as "Ms.Management" will address some of these issues. Unfortunately, due to the nature of what I'm going through, some of the specifics (agencies, etc.) will not be detailed and some posts may be more general until a later date. Even so, I hope these posts may eventually serve to be a source of encouragement, information, and possibly just to let others know that they are not alone in this struggle.
1. Robert Burgdorf wrote the Americans with Disabilities Act (more info here) and Crystal Lee Sutton started a union in North Carolina (you may know the movie version - Norma Rae) and you can find out more (here - website for her archive)
2. In my mind - fair would equate to all of us experiencing the same limitations and needing the same accommodations/considerations. Obviously that's not realistic. Just is that we all experience different limitations and therefore have differing accommodations/considerations but the process is still just - maybe not as perceived by people who do not understand. This is difficult as people tend to complain when they feel like someone is getting special treatment - they just don't understand the other side of it. If I have an office to myself and you think that's crap maybe you should try living a few days where every noise, sensation, light, or smell is either magnified till it's unbearable or dulled until it's nonexistent randomly throughout your day and we'll see how long before you trade you're shared office for other aspects of my life. Having said that - I wouldn't trade aspects of who I am or why in order to avoid the sensory issues - They are mine and you cannot have them. Remove them and you remove aspects of me. Sometimes you can do really cool things with the senses and if everybody else would let me manage my own life, they wouldn't go biggeldy-puck all the time. (biggeldy-puck has just won a place as a label, welcome aboard!)
3. If Jim has a colostomy bag - everyone can see that, even if they don't understand what it means for Jim's quality of life. If Jenny has carpal tunnel - everyone can see "evidence" of that and may have a limited understanding of what that means for her. [I must note that many people's knowledge of certain health problems - like carpal tunnel - is stinted and based on idiotic assumptions. ie: Jenny has carpal tunnel. Jenny needs to wear wrist braces. Not wearing wrist braces means Jenny either doesn't have carpal tunnel or that her carpal tunnel isn't bad or isn't bothering her. <- this is idiotic thinking based on a false assumption regarding wrist braces - which actually cause more harm to the carpal tunnel than good - as they can place pressure on the tunnel, compounding the problem.]
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