A little over a week ago I went to go get my pass for paratransit service renewed. For those of you who don't know what paratransit service is, I'll summarize below. Otherwise, skip this following paragraph:
The Americans with Disabilities Act (ADA) requires for most public transit services to offer paratransit service. This service is for disabled people who have trouble accessing regular public transit-- either sometimes or all of the time. The idea is that accessible vehicles are able to pick us up from one location and to take us to our second location (if not closer to it). These rides must be requested way ahead of time-- usually several days ahead of time. It is supposed to be comparable to a regular bus service... which totally never happens, but back to the topic at hand...
Since this was just a renewal of services I already had an idea of how things would go. My local public transit service had an appointment for me scheduled at their headquarters. They were going to ask for a basic update on my health issues- specifically the issues that would make riding the regular bus service difficult or impossible. They were going to measure my wheelchair to make sure that it would fit in their standard vehicles, and I was going to need to take an updated photo for my new ID card. Same old same old, right?
Well, not exactly.
As the employee who I had an appointment with greeted me and we began to talk I noticed how she had some opinions about other disabled people who she met (through her work) that I didn't exactly agree with. I know what you're thinking... "You met a stranger who you disagreed with something on and then you decided to make a blog post about it?" Well, it wasn't that I disagreed with someone about something that was the issue. That happens every single day, and it's okay. But it was the topic that hit me.
During the meeting she asked about my work. It wasn't exactly relevant to the task at hand but since when is small talk ever relevant? I'm privileged enough to do work that I think is worth sharing, so I shared it, and gladly so!
Without disclosing the names of the places that I work at, I'm going to describe them. Right now I'm doing a fellowship at an educational organization that is empowering youth to take charge of their future and enabling them to learn things that public education does not teach. If this says anything about them, what I had was originally an internship but I loved what I did so much that I asked to stay longer and was embraced with open arms! I am also involved with an organization that helps disabled adults who have similar conditions as mine with living independently, and just in general with being able to do things that involve our quality of life. While the latter is what I like to call "part part time" (haha) I still love what I do.
As you can imagine, the employee was impressed when I told her what I did. I'm not quite sure if she was amazed that I worked at all or that they were both community-oriented jobs, but she was impressed nonetheless.
The employee remarked that the paratransit service needed to keep me around because there are so many people like me who can work but don't. I was taken aback, but I told her thanks.
I smiled as I thought "If only you knew what it took for me to get to where I am today."
You see, where I live the minimum legal age that one can work is at the age of 14. This means that from the age of 14 I could've hypothetically been employed. While I didn't start looking until I was a little older, when I did look I looked hard.
I quickly realized how many jobs I was prevented from doing because the spaces weren't wheelchair accessible. I quickly realized how many jobs I was prevented from doing because I was able to do one part of the job and not the other. I quickly realized how many jobs I was prevented from doing because I couldn't meet the lifting requirement (even though lifting heavy things had absolutely nothing to do with their job descriptions). I quickly realized how many jobs I was prevented from doing because I didn't have a bachelor's degree. The reasons just kept piling up and up and it never stopped.
I got stuck in a cycle of looking for work, giving up, then looking for work, giving up, and so forth. In between this cycle were hospitalizations due to pneumonia and other health issues, major life events and more. I felt like I couldn't win.
One day, during my 21st year, I came across an agency that claimed to help young disabled adults find entry-level jobs. I found out that they had an office in my city. Surely this was my moment, right? I quickly sent them an email and asked how I could get more information. On that same day I also did some job searching of my own, coming across the internship-turned-fellowship that I hold to this day. I fixed up my resume (which had absolutely no job experience on it, of course). It wasn't a particularly impressive one, but I sent in an application anyway.
Not too long after that I was contacted by the agency that claimed to help young disabled adults find jobs. They were so kind, and I felt like they respected me as an adult. Because they had connections I felt like I was really going to get my first job with their help!
Long story short, I ended up getting a call back from the organization I sent an application to and ended up with a job offer! (How ironic of that happening right after I contacted an agency for job help, right?)
The agency convinced me that I should still work with them as my job offer was technically an internship offer with an end date. I knew my body so I mentioned how I would have to wait until my internship was over because there was no way that I could do two jobs at once. They convinced me to just try it. It goes without saying that that situation ended poorly. I ended up with another job (sans end date) that I absolutely despised. I knew that mentally I could not handle the situation that I was in so I needed to make a decision.
Naturally, the agency tried to convince me to quit my internship. Even though my internship paid a lot more and I was doing work that truly was going to change the world for the better, that didn't matter to them. Even though the job that the agency helped me get essentially had me acting as Big Brother (which wasn't anywhere near the job description I was given), that didn't matter to them. Even though I was spending a chunk of my daily pay for paratransit services (which had me in a vehicle for about 3 hours each day even though my house was only 20 minutes away from the job), that didn't matter to them. Even though I was becoming more and more sick due to fatigue (which is a primary symptom of my health condition), that didn't matter to them. They wanted me to quit my internship.
To be completely honest, the agency gaslit me. I was reminded of the employment rate statistics for people like me. They reminded me how hard it is for people like me to get businesses to hire us. Even though the role that I had was one that was created for me (as the employer didn't intend on hiring more than a certain amount of people but they loved my interview), someone who worked with the agency remarked on how selfish it was for me to want to quit my job. How I had taken that job from someone else. They tried to convince me that I didn't know what was best for my future. They did so many other things that I won't mention because that's not the point of this post.
You can imagine, making a decision was difficult but it had to be done. After talking to a benefits counselor and realizing that I was participating in a completely legal money-making scheme I realized that my opinion was the only one that mattered because the agency was going to tell me to do anything that made them money even if my health and other needs were at jeopardy. I quit the job and severed ties with that agency (though they continued to call and email me to "see how things were going" for six months or so after the fact).
I had no idea what I was going to do after the internship was up and that was when my boss (at the fellowship) told me that I should champion for an extension... and so I did. I got the help of professionals that I knew to help me prepare, and I did it. I also got an incredible raise. I was so excited. (Somewhat related: If I'm going to be completely honest, it "helped" that I had recently lost any public assistance that I had which means that I did not have to decline my raise to keep my health insurance. While I was going into so much debt due to health bills (a lot of them from having to use my trusty ventilator), at least didn't have to decline a raise, right? ...Right?)
Being able to turn my job into a fellowship meant that I had a lot more time to figure my stuff out. I was given a lot of inspiration from figuring out that I was capable of more than I thought, and I decided that I would invest my pay into training (that I had already been doing for a few years by this point) that would eventually allow me to employ myself. That's in the works right now. (I'm figuring it out as I go!)
As you can see, my journey to employment was anything but easy. My journey to continuing to have employment after these stints has been anything but easy as well. If I did not have the capital from the jobs I've done this far, I wouldn't have been able to continue my training that will eventually allow me to be my own employer.
I was blessed to have not had any hospitalizations up until recently, and I'm blessed that the one that I recently had did not keep me out of work for too long. I'm blessed that my boss is so understanding. There are so many things that have had to align for me to be able to work and for me to be able to continue to work and next to none of these things were in my control.
Having lost my public assistance (medical insurance) that capped what my income levels could've been (and would've taken half of every dollar that I would've earned through any job) was out of my control. Having a boss who had never hired a physically disabled person before but who was willing to figure things out with me was out of my control. My health being relatively stable for most of these recent years was out of my control, and to be quite honest unexpected. The jobs available to me in my area were out of my control- therefore the few ones that I could do and had the qualifications for were out of my control. Me knowing people who could give me reputable advice on what I was going through with my jobs was out of my control. The list does not end.
I know a lot of people who aren't as lucky as I have been during this past year.
There are so many adults who have the same condition that I have who are ready and able to work but with caregiver shortages affecting them nationwide, they can't even get reliable care to be able to work. There are so many people like me who want to work but because they can't even get someone to hire them for that first job they never get that "two years of experience." There are so many people like me who are able to do non-physically demanding jobs but because they don't have a bachelor's degree, they never get the chance to even send in their resume.
There are even people like me who have degrees but because of disability discrimination (ableism) they never get the chance to get hired. Speaking of that, before I got my first job I had a chat with an older friend of mine. She has a similar condition as I have. I talked to her about how I didn't have the resources necessary to go to college for a bachelor's, and how that seemed like the only way I would ever be able to get work. I talked about how I was still trying, though. She mentioned how she graduated college with a bachelor's degree but after she graduated no one would hire her so she never got to put the degree to use. As I thought about her situation I thought "If this woman, who was way more physically able than I was at the time and who had a bachelor's degree could never get hired, what chance do I have?" This wasn't at all what my friend was trying to get me to do but as I thought more about it I almost came to the conclusion that I would just have to get used to not being deemed employable even though I was. (Little did I know that what was right around the corner!)
For someone who is in my exact situation, I'm an anomaly. I know that there's no reason why I should have a job and so many disabled people I know shouldn't have job offers as well.
Yes, it's true. Traditional employment is not really made with disabled people in mind. It doesn't take into account if your nurse doesn't come in and you aren't able to get out of bed for work. It doesn't take into account flares. It doesn't take into account hospitalizations that can last for weeks. It doesn't take into account transportation issues (often caused by paratransit issues, ironically enough). It doesn't take so much into account, and that's only covering physical health issues!
...But things can be accommodated. With employers who won't recognize that and who are more quick to fire than they are to hire disabled people, and with a public aid system that highly penalizes disabled people for working (therefore indirectly helping push stereotypes that we don't want to work and/or can't work), there is no question why things will continue to be the way that they are.
Employers need to recognize exactly how much of an asset disabled employees can be. With my internship-turned-fellowship for example, I was able to show exactly how much I was capable of to the organization I work for. I surpassed all expectations that they had for me (with the help of accommodations) and they remind me how grateful they are to have me on their team all of the time. They recognize the value that I bring to them, and vice versa.
Slowly but surely, larger employers are beginning to hire more disabled people and studies that are done on them are confirming so many things. These studies are confirming that disabled people are performing their jobs just as well as others. They're confirming that disabled people overall are absent from their jobs less. That they don't have a high turnover rate. This is only the beginning to the benefits that businesses can have when they hire disabled people.
All that said, this is why what the paratransit worker said bothered me. Because she was from the outside looking in. All those years that I was looking for work? She would've surely viewed me as she viewed the other disabled people that she thinks I should be inspiring. But the truth is those disabled people are working incredibly hard just to hopefully win the job-offer lottery that I have won. Disabled people are volunteering with so many organizations. They are involved in their communities. They are aiming for and achieving further education. They are doing so much and they never get credit for it.
And even if a disabled person isn't pursuing work, that does not mean that they can work. Disabled people should not be judged in comparison to other disabled people as it's often from ignorance, and it puts us up against each other.
I am not a "model disabled person" any more than I was when I wasn't working. Truth be told, so many disabled people who don't work are working harder than I do. And our ability to work should not determine our worth. We shouldn't be judged by our ability to make others money.
That's why I say that just because a disabled person can work doesn't mean they're actually able to.
More often than not, it's not our disability that is stopping us from being able to do work that one can get paid for (in any capacity) but rather discrimination and the systems that we must depend on in order to survive.
The Americans with Disabilities Act (ADA) requires for most public transit services to offer paratransit service. This service is for disabled people who have trouble accessing regular public transit-- either sometimes or all of the time. The idea is that accessible vehicles are able to pick us up from one location and to take us to our second location (if not closer to it). These rides must be requested way ahead of time-- usually several days ahead of time. It is supposed to be comparable to a regular bus service... which totally never happens, but back to the topic at hand...
Since this was just a renewal of services I already had an idea of how things would go. My local public transit service had an appointment for me scheduled at their headquarters. They were going to ask for a basic update on my health issues- specifically the issues that would make riding the regular bus service difficult or impossible. They were going to measure my wheelchair to make sure that it would fit in their standard vehicles, and I was going to need to take an updated photo for my new ID card. Same old same old, right?
Well, not exactly.
As the employee who I had an appointment with greeted me and we began to talk I noticed how she had some opinions about other disabled people who she met (through her work) that I didn't exactly agree with. I know what you're thinking... "You met a stranger who you disagreed with something on and then you decided to make a blog post about it?" Well, it wasn't that I disagreed with someone about something that was the issue. That happens every single day, and it's okay. But it was the topic that hit me.
During the meeting she asked about my work. It wasn't exactly relevant to the task at hand but since when is small talk ever relevant? I'm privileged enough to do work that I think is worth sharing, so I shared it, and gladly so!
Without disclosing the names of the places that I work at, I'm going to describe them. Right now I'm doing a fellowship at an educational organization that is empowering youth to take charge of their future and enabling them to learn things that public education does not teach. If this says anything about them, what I had was originally an internship but I loved what I did so much that I asked to stay longer and was embraced with open arms! I am also involved with an organization that helps disabled adults who have similar conditions as mine with living independently, and just in general with being able to do things that involve our quality of life. While the latter is what I like to call "part part time" (haha) I still love what I do.
As you can imagine, the employee was impressed when I told her what I did. I'm not quite sure if she was amazed that I worked at all or that they were both community-oriented jobs, but she was impressed nonetheless.
The employee remarked that the paratransit service needed to keep me around because there are so many people like me who can work but don't. I was taken aback, but I told her thanks.
I smiled as I thought "If only you knew what it took for me to get to where I am today."
You see, where I live the minimum legal age that one can work is at the age of 14. This means that from the age of 14 I could've hypothetically been employed. While I didn't start looking until I was a little older, when I did look I looked hard.
I quickly realized how many jobs I was prevented from doing because the spaces weren't wheelchair accessible. I quickly realized how many jobs I was prevented from doing because I was able to do one part of the job and not the other. I quickly realized how many jobs I was prevented from doing because I couldn't meet the lifting requirement (even though lifting heavy things had absolutely nothing to do with their job descriptions). I quickly realized how many jobs I was prevented from doing because I didn't have a bachelor's degree. The reasons just kept piling up and up and it never stopped.
I got stuck in a cycle of looking for work, giving up, then looking for work, giving up, and so forth. In between this cycle were hospitalizations due to pneumonia and other health issues, major life events and more. I felt like I couldn't win.
One day, during my 21st year, I came across an agency that claimed to help young disabled adults find entry-level jobs. I found out that they had an office in my city. Surely this was my moment, right? I quickly sent them an email and asked how I could get more information. On that same day I also did some job searching of my own, coming across the internship-turned-fellowship that I hold to this day. I fixed up my resume (which had absolutely no job experience on it, of course). It wasn't a particularly impressive one, but I sent in an application anyway.
Not too long after that I was contacted by the agency that claimed to help young disabled adults find jobs. They were so kind, and I felt like they respected me as an adult. Because they had connections I felt like I was really going to get my first job with their help!
Long story short, I ended up getting a call back from the organization I sent an application to and ended up with a job offer! (How ironic of that happening right after I contacted an agency for job help, right?)
The agency convinced me that I should still work with them as my job offer was technically an internship offer with an end date. I knew my body so I mentioned how I would have to wait until my internship was over because there was no way that I could do two jobs at once. They convinced me to just try it. It goes without saying that that situation ended poorly. I ended up with another job (sans end date) that I absolutely despised. I knew that mentally I could not handle the situation that I was in so I needed to make a decision.
Naturally, the agency tried to convince me to quit my internship. Even though my internship paid a lot more and I was doing work that truly was going to change the world for the better, that didn't matter to them. Even though the job that the agency helped me get essentially had me acting as Big Brother (which wasn't anywhere near the job description I was given), that didn't matter to them. Even though I was spending a chunk of my daily pay for paratransit services (which had me in a vehicle for about 3 hours each day even though my house was only 20 minutes away from the job), that didn't matter to them. Even though I was becoming more and more sick due to fatigue (which is a primary symptom of my health condition), that didn't matter to them. They wanted me to quit my internship.
To be completely honest, the agency gaslit me. I was reminded of the employment rate statistics for people like me. They reminded me how hard it is for people like me to get businesses to hire us. Even though the role that I had was one that was created for me (as the employer didn't intend on hiring more than a certain amount of people but they loved my interview), someone who worked with the agency remarked on how selfish it was for me to want to quit my job. How I had taken that job from someone else. They tried to convince me that I didn't know what was best for my future. They did so many other things that I won't mention because that's not the point of this post.
You can imagine, making a decision was difficult but it had to be done. After talking to a benefits counselor and realizing that I was participating in a completely legal money-making scheme I realized that my opinion was the only one that mattered because the agency was going to tell me to do anything that made them money even if my health and other needs were at jeopardy. I quit the job and severed ties with that agency (though they continued to call and email me to "see how things were going" for six months or so after the fact).
I had no idea what I was going to do after the internship was up and that was when my boss (at the fellowship) told me that I should champion for an extension... and so I did. I got the help of professionals that I knew to help me prepare, and I did it. I also got an incredible raise. I was so excited. (Somewhat related: If I'm going to be completely honest, it "helped" that I had recently lost any public assistance that I had which means that I did not have to decline my raise to keep my health insurance. While I was going into so much debt due to health bills (a lot of them from having to use my trusty ventilator), at least didn't have to decline a raise, right? ...Right?)
Being able to turn my job into a fellowship meant that I had a lot more time to figure my stuff out. I was given a lot of inspiration from figuring out that I was capable of more than I thought, and I decided that I would invest my pay into training (that I had already been doing for a few years by this point) that would eventually allow me to employ myself. That's in the works right now. (I'm figuring it out as I go!)
...That probably seemed like a huge tangent, but hang in there with me, okay?
As you can see, my journey to employment was anything but easy. My journey to continuing to have employment after these stints has been anything but easy as well. If I did not have the capital from the jobs I've done this far, I wouldn't have been able to continue my training that will eventually allow me to be my own employer.
I was blessed to have not had any hospitalizations up until recently, and I'm blessed that the one that I recently had did not keep me out of work for too long. I'm blessed that my boss is so understanding. There are so many things that have had to align for me to be able to work and for me to be able to continue to work and next to none of these things were in my control.
Having lost my public assistance (medical insurance) that capped what my income levels could've been (and would've taken half of every dollar that I would've earned through any job) was out of my control. Having a boss who had never hired a physically disabled person before but who was willing to figure things out with me was out of my control. My health being relatively stable for most of these recent years was out of my control, and to be quite honest unexpected. The jobs available to me in my area were out of my control- therefore the few ones that I could do and had the qualifications for were out of my control. Me knowing people who could give me reputable advice on what I was going through with my jobs was out of my control. The list does not end.
I know a lot of people who aren't as lucky as I have been during this past year.
There are so many adults who have the same condition that I have who are ready and able to work but with caregiver shortages affecting them nationwide, they can't even get reliable care to be able to work. There are so many people like me who want to work but because they can't even get someone to hire them for that first job they never get that "two years of experience." There are so many people like me who are able to do non-physically demanding jobs but because they don't have a bachelor's degree, they never get the chance to even send in their resume.
There are even people like me who have degrees but because of disability discrimination (ableism) they never get the chance to get hired. Speaking of that, before I got my first job I had a chat with an older friend of mine. She has a similar condition as I have. I talked to her about how I didn't have the resources necessary to go to college for a bachelor's, and how that seemed like the only way I would ever be able to get work. I talked about how I was still trying, though. She mentioned how she graduated college with a bachelor's degree but after she graduated no one would hire her so she never got to put the degree to use. As I thought about her situation I thought "If this woman, who was way more physically able than I was at the time and who had a bachelor's degree could never get hired, what chance do I have?" This wasn't at all what my friend was trying to get me to do but as I thought more about it I almost came to the conclusion that I would just have to get used to not being deemed employable even though I was. (Little did I know that what was right around the corner!)
For someone who is in my exact situation, I'm an anomaly. I know that there's no reason why I should have a job and so many disabled people I know shouldn't have job offers as well.
Yes, it's true. Traditional employment is not really made with disabled people in mind. It doesn't take into account if your nurse doesn't come in and you aren't able to get out of bed for work. It doesn't take into account flares. It doesn't take into account hospitalizations that can last for weeks. It doesn't take into account transportation issues (often caused by paratransit issues, ironically enough). It doesn't take so much into account, and that's only covering physical health issues!
...But things can be accommodated. With employers who won't recognize that and who are more quick to fire than they are to hire disabled people, and with a public aid system that highly penalizes disabled people for working (therefore indirectly helping push stereotypes that we don't want to work and/or can't work), there is no question why things will continue to be the way that they are.
Employers need to recognize exactly how much of an asset disabled employees can be. With my internship-turned-fellowship for example, I was able to show exactly how much I was capable of to the organization I work for. I surpassed all expectations that they had for me (with the help of accommodations) and they remind me how grateful they are to have me on their team all of the time. They recognize the value that I bring to them, and vice versa.
Slowly but surely, larger employers are beginning to hire more disabled people and studies that are done on them are confirming so many things. These studies are confirming that disabled people are performing their jobs just as well as others. They're confirming that disabled people overall are absent from their jobs less. That they don't have a high turnover rate. This is only the beginning to the benefits that businesses can have when they hire disabled people.
All that said, this is why what the paratransit worker said bothered me. Because she was from the outside looking in. All those years that I was looking for work? She would've surely viewed me as she viewed the other disabled people that she thinks I should be inspiring. But the truth is those disabled people are working incredibly hard just to hopefully win the job-offer lottery that I have won. Disabled people are volunteering with so many organizations. They are involved in their communities. They are aiming for and achieving further education. They are doing so much and they never get credit for it.
And even if a disabled person isn't pursuing work, that does not mean that they can work. Disabled people should not be judged in comparison to other disabled people as it's often from ignorance, and it puts us up against each other.
I am not a "model disabled person" any more than I was when I wasn't working. Truth be told, so many disabled people who don't work are working harder than I do. And our ability to work should not determine our worth. We shouldn't be judged by our ability to make others money.
That's why I say that just because a disabled person can work doesn't mean they're actually able to.
More often than not, it's not our disability that is stopping us from being able to do work that one can get paid for (in any capacity) but rather discrimination and the systems that we must depend on in order to survive.