On The ADA Anniversary

This week is the anniversary of the Americans with Disabilities Act (ADA)

I’ve often wondered if the ADA creates more problems than it solves for some, if not all, people with disabilities. It helps A LOT, but it also causes a lot of headaches.

I’ve come to realize however, that the ADA isn’t really for people with disabilities. It’s for the people who can’t even imagine what life is like to live with a disability.

Kind of like how birthday parties really aren’t for the people they’re throne for but for the people that go to them.

Kinda.

Without knowing it I managed to grow up just as the ADA was finding its “sea legs,” which probably explains why so many aspects of my life have become, in a sense, easier even though my mobility had had an endless ebb and flow.

I once heard it said that, “those who don’t need the law are truly freed from the law,” or at least that’s the best my brain remembers it as.

The idea being (I think) that we wouldn’t need as many laws (or any) if everyone operated with the same level of moral decency.

As great of an idea as this is I doubt it will ever happen, ever. Sorry all of you who dream of world peace.

It would be nearly impossible for someone to be able to imagine what it’s like to live with a disability, unless they do in fact live with a disability themselves; besides the fact that imagining it and living it are two different things.

That’s why the ADA is so important.

It gives people a clue into what’s needed in order for people with disabilities. Although it should be pointed out that what’s deemed ADA compliant doesn’t mean it’s accessible for those who need it to be, but it’s better than nothing.

(So if you don’t know anything about the ADA or just want to test yourself feel free to read up)

As much as I (and countless others) benefit from the ADA there always seems to be something new to learn.

Such as how many loopholes there are.

Like the loopholes for already existing buildings and/or religious institutions.

As a Catholic who works in a building that’s been “grandfathered in” (multiple flights of stairs and no elevator) I curse such loopholes often.

It would be nice if there were less (or no) loopholes in the ADA but that’s only a short-term dream. Someday I’d like it if the ADA was an afterthought, making it in a sense unnecessary because access for all is a natural thing.

It seems so wildly unrealistic, but I can hope right?

*A similar version of this post was written on July 22, 2014

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I Wish I Was A Unicorn

On a recent episode of The Accessible Stall Kyle & Emily talked about employment/unemployment. Naturally this topic hits close to home at the moment, so I gave it a listen, naturally.

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You should give it a listen when you’re done here.

Both Emily and Kyle acknowledge that they’re both in the unique position of being gainfully employed but that’s not the part that stood out to me, although it should be noted that it’s highly unusual for two normal (meaning not really that famous) disabled people to be financially self-sufficient.

They called themselves unicorns.

Then it hit me.

I wish I was a unicorn too.

I want to be a unicorn.

I do have a dream job in mind, several actually. I’d like to achieve my dreams but right now I want to be a unicorn.

I am already a unicorn, in a sense, but I don’t feel like a “full unicorn.” I have no upward mobility in my current job. Some days I feel like I’m just filling a spot until someone else comes along or I leave my position. So, I’m more of a non-unicorn than the actual unicorn I wish I was.

There you have it, I’m still looking for a job. If it happens to be my dream job than that’s a bonus. But more than anything I want to be a unicorn, not because I want to be a unicorn, but because I don’t think anyone should go around wondering or knowing if they are the unicorn of their workplace in the future.

When Dreams Become Anything But

By this time last year I was dreaming about what my life would be like without school.

I was literally dreaming of being able to pick up a book or watch a TV show without time constrains, journal, and look for more meaningful long-term employment with more intentionality.

Now that I have the time to fulfill this dream it’s more akin to a nightmare than a dream.

I won’t go as far as to say I miss being in school, but it did provide me with a certain amount of structure I’m struggling to create on my own.

The congratulatory messages have slowed down, but have not stopped completely, which adds to the complexity of my situation. The questions of “what’s next?” have followed, and I feel utterly stupid saying “I have no idea,” even if it is the honest truth.

I have an idea of what I’d like my “next” to be but that doesn’t mean it will happen, at least not right out of the gate. It would be nice if that happens but age has taught me to be more realistic than optimistic.

I check job sites every day and sometimes submit 3 resumes, complete with individually written cover letters. I have gotten interviews, so that’s one step further than I had been getting in the last few years, but nothing past that.

Nothing.

I knew looking for a job wouldn’t be dreamlike. I was pretty sure it would be pretty much the opposite. But I was hoping the other things I had on the back burner for years would give me a sense of balance, not getting a job would be offset by being able to read a book at will.

I see how ridiculous this sounds, but I believe it, well believed.

I have read a fair number of books in-between writing cover letters but it’s not as dreamlike as I would have thought. The reading books part, not the writing cover letters part.

It’s a weird experience to write about yourself. You become incredibly analytical of yourself, every shortcoming gets magnified and every strength gets minimized, at least if you’re me. Then you’re left wondering, “is this really me?” “Is this really my best self?”

It’s really not the best place for your mind to be in when you need to be on your game, but you make do.

Now instead of dreaming of what my life may look like a year from now (or even any shorter window of time) I’m managing my expectations, not putting all of my eggs in one basket and not getting my hopes up most of all.

Life isn’t turning out the way I thought it would in post-postgrad life but what does?

By this time last year I was dreaming about what my life would be like without school.

I was literally dreaming of being able to pick up a book or watch a TV show without time constrains, journal, and look for more meaningful long-term employment with more intentionality.

Now that I have the time to fulfill this dream it’s more akin to a nightmare than a dream.

I won’t go as far as to say I miss being in school, but it did provide me with a certain amount of structure I’m struggling to create on my own.

The congratulatory messages have slowed down, but have not stopped completely, which adds to the complexity of my situation. The questions of “what’s next?” have followed, and I feel utterly stupid saying “I have no idea,” even if it is the honest truth.

I have an idea of what I’d like my “next” to be but that doesn’t mean it will happen, at least not right out of the gate. It would be nice if that happens but age has taught me to be more realistic than optimistic.

I check job sites every day and sometimes submit 3 resumes, complete with individually written cover letters. I have gotten interviews, so that’s one step further than I had been getting in the last few years, but nothing past that.

Nothing.

I knew looking for a job wouldn’t be dreamlike. I was pretty sure it would be pretty much the opposite. But I was hoping the other things I had on the back burner for years would give me a sense of balance, not getting a job would be offset by being able to read a book at will.

I see how ridiculous this sounds, but I believe it, well believed.

I have read a fair number of books in-between writing cover letters but it’s not as dreamlike as I would have thought. The reading books part, not the writing cover letters part.

It’s a weird experience to write about yourself. You become incredibly analytical of yourself, every shortcoming gets magnified and every strength gets minimized, at least if you’re me. Then you’re left wondering, “is this really me?” “Is this really my best self?”

It’s really not the best place for your mind to be in when you need to be on your game, but you make do.

Now instead of dreaming of what my life may look like a year from now (or even any shorter window of time) I’m managing my expectations, not putting all of my eggs in one basket and not getting my hopes up most of all.

Life isn’t turning out the way I thought it would in post-postgrad life but what does?

Maybe I’m Not An Expert

With March coming to a close so goes my blogging blitz. It never ends up how I think it’s going to and this year was no exception.

I feel like this year was different than the others, for a few reasons, less facts, more stories, for one thing, or is that two?

There were topics I wanted to write about but never got around to or have already written about. When I came up short I dove into my archives, probably more than I wanted to, but it worked. I think?

I’ll get to more stories later on, possibly when the timing is better.

One thing that kept getting my attention this year was the focus on children and the desire to treat, if not cure Cerebral Palsy as soon as possible.

This isn’t new by any means, but it seems to be gaining more attention for whatever reason.

In a way my focus this past month has been more personal because it’s how I’ve grown into adulthood and the different phases of life that people, CP or no CP, find themselves in.

Not every aspect of life comes with statistics, and even those that do come with outliers.

So, for now, and probably in the future, I leave you with more stories than statistics because you can find statistics somewhere else.

Life as an adult with CP is an oddity, a misconception which I brush up against every day, so although Cerebral Palsy Awareness month is over that doesn’t mean my efforts are over, at least not completely.

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All Cerebral Palsy related posts

Someone Like Me: A Review

Thirteen Reason’s Why You Should Read “Someone Like Me”
by John W. Quinn

  1. I could’ve written multiple pages of this book by page 30. So if you like this blog you’ll like this book.

2 John’s taken the pressure of me to write a book.

  1. It gives “Don’t Ask Don’t Tell” a whole new meaning.
  2. It’s not all sunshine & rainbows, because it’s real.
  3. “…if pain is constant, is it even pain? Or is it merely my normal state of being?” (p. 20)
  4. A guy who made it though boot camp was told “heel toe, heel toe” in his lifetime.
  5. It proves the call to service is really meant for everyone.
  6. John’s best friend called him a quitter, so he didn’t quit.
  7. This book pretty much epitomizes that hard work pays off.
  8. Chapter 6
  9. I’ve already sent it to someone else to read, something I rarely do.
  10. I’d give it my full endorsement (if asked)
  11. “You are never alone. There is always hope”

*A similar version of this post first appeared on an old blog on February 17, 2011

 

Money For Nothing & Jobs For Free

Job searching isn’t fun. In fact, looking for a job should count as a job, speaking as someone who’s in the thick of it yet again. It can be even more daunting if you’re disabled, especially if you know the statistics surrounding employment/unemployment of the disabled. You want to be one that defies the statistics, not become in included in the statistics.

I’ve done everything I can think of at various points of time in job searching. I’ve gone it alone. I’ve networked. I’ve sought employment help from disability related organizations. I’ve read nearly every article I’ve come across. Every avenue has come with a different level of success (or failure) which I won’t go into, because it could basically be a book in itself.

The one thing everyone, oddly, seems to come to an agreement on is the value of volunteering. As someone who started their resume with various volunteer positions I’d be a hypocrite if I said they didn’t have some value. However you can’t pay bills with volunteer positions alone, and there are times when they become exploitive (especially for minority populations).

 

I don’t mind taking a free gig, but I won’t make a habit of it (and I don’t think I’m in the minority on this one). There also needs to be a self-determined payoff in order for me to take on a gig for free, but that’s up to me and no one else.

I have turned down more engagements than I’ve accepted because there isn’t some sort of return. I know it probably sounds selfish to people, but time is valuable, no matter your circumstances. I wish more people would recognize that no matter their own circumstances, but especially those of any minority.

Everyone has their own priorities as to what’s acceptable or not, but I don’t think we can solely blame organizations for treating people like marketing props. People with disabilities in particular need to take some ownership over it as well.

If you want to volunteer that’s fine but know that it may not get you where you think, no matter what you’ve been promised. There’s a reason why the saying, “why buy the cow when you can get the milk for free,” caught on and still applies to many situations today. Why would anyone pay for something they can get for free?

If you want to get compensated for whatever service (read: expertise) you can provide then you should make that clear, along with what you must have verses what you are willing to negotiate on. It’s OK to walk away. It’s not OK to be taken advantage of, no matter how positive and convincing people can be.

Everyone needs to recognize their value and stick to it if they want anyone else to see that they have value. However, there’s also the possible fact that if you pass up an opportunity because of lack of compensation someone else won’t pass up the opportunity. I don’t say that in any other way than to make people aware that it can and does happen.

I say that persons with disabilities are also partly to blame because so many of us fall for the idea that we have no other options than to take on work for free.

It is not true.

More importantly, it isn’t fair.

We can’t complain that we aren’t being treated as equals if we act like we are equals.

I think there’s also a misconception that everyone with a disability gets money from the government therefore they can afford to take on free labor without economic pressure. This is not true. Not to mention that getting government assistance doesn’t mean you can take any job for added income, if you make too much money you lose your assistance. It’s a catch 22 that no one likes (or wants to be in).

We don’t get money for “nothing” so we shouldn’t take jobs for “free.”

People with disabilities, especially those with Cerebral Palsy, are not props. We are people. We shouldn’t feel obligated to take labor for free, for any reason. Organizations need to stop making those offers and the disability community should stop taking them.

 

Get To Work!

Today’s post is all about work.
A small part of me wants to laugh at the thought of me giving work/career advice. I’ve had great jobs and not so great jobs in my short tenure in the workforce. I’ve fallen on my face, both literally and figuratively, more than a person should ever be allowed to.

I’m still figuring it out myself so proceed with caution.

Advice I would give to job searchers:
This may sound obvious (and possibly controversial) but make sure you can do the job before you apply. Don’t just “think” that you can do it. Know you can do it, from climbing the stairs, answering the phone, what have you.

There’s a good chance you know something (or someone) about the company you want to work for. Ask them questions; if you don’t have any connections then try calling them and asking your questions. Be sure and be specific since accessible is in the eye of the beholder. Do your best to look for ways to require the least amount of accommodations possible.

There’s a good chance that you’ll be looked at in terms of “additional barriers” when you go in for an interview. It’s illegal for them to judge your potential employment based on that or say anything about it (but that doesn’t mean the thoughts are off limits).

Also think long term, my work building is considered to be accessible. I noticed a few questionable things when I was hired, but I wasn’t expecting to be there very long so I didn’t think too much about it. Now its years later and I have a different position, one that requires me to be all over the building.

There is no elevator, but there are 3 flights of stairs.

Most of the storage spaces are in overhead cabinets or floor to ceiling closet shelves. There’s also only one fairly large step stool to use.

I’m 4’11” and fatigue easily, so neither of these seemly small details works to my benefit.

I’m basically forced to ask for help more than I would like to (& I hate it).

How I juggle a job with a disability:
I have to treat my time like I have 3 jobs & a disability, because that’s my reality. There’s very little juggling involved these days since everything has different deadlines, time requirements, etc. It does get hard when I have to factor in various “disability related” appointments and my jobs but it’s just something I have to deal with, so I have to make it work. Luckily it only happens a few times a year so it’s manageable even if it’s not always preferred.

I know a lot of people with a disability prefer to work from home. I thought I’d be one of them, but I’m not enjoying it as much as I thought I would. Although it does help that 2 out of my 3 jobs can be done from home (or wherever I happen to be) so I don’t have to factor in additional commuting time and such. As much as I don’t like going to work it does help me to get out of the house (so that’s a factor worth considering).

Tips I would give for an interview:
I’m not the best interviewee, by a long shot. I’m much better at interviewing; at least I think so, so I’m far more equipped to give the point of view from the other side of the table.

I don’t think you should have to disclose your disability, however don’t use it as an excuse later on if you’re talked to about your performance (if it’s not good). If you think you’re falling behind, not pulling your weight, etc., then own up to it and say you’d like some feedback, and then that would be a good time to bring up any disabilities.

If you think your disability may cause unique challenges and you want to make your potential employer aware of them then do so.

I can only speak for myself, but I prefer upfront disclosure to “using” a disability to your benefit, like trying to give yourself an out in unfavorable situations. (Side note: I can’t believe that that’s happened to me in my work life enough that I felt a strong need to mention it.) Also, please don’t assume that because a co-worker, supervisor, or manager, also had a disability that they’re going to see you as a kindred spirit and cut you a break. It could happen, but it could also come back to bite you.

So, there’s my advice for job searching/interviewing/having a job. It may not be popular or politically correct, but no one has ever accused me of being either.

*A similar version of this post first appeared on an old blog on April 8, 2018

Get A Job!

At the beginning of my last year of formal education I faced a similar predicament as most of my peers. I had determined pretty quickly that graduate school was not for me; the only post-graduation conclusion I came to faster was religious life was most certainly not for me. I had one choice left.

I needed a job.

A task I failed in such spectacular fashion that it’s only by the Grace of God that I can tell you that there’s hope (and a happy ending) for everybody.

I made the decision to put off applying for jobs until my final semester, something I don’t recommend as a general rule. I knew I was heading into a world of low paying jobs regardless, so why not live in ignorance for a little longer?

I had every intention of going into the entertainment industry, or arts ministry. Neither of which are areas in which your average college career services office can help you with. I think I set foot in career services twice.

Most arts related departments know that they have to fill in the gap. That’s why they have this thing called “lab” or “practicum.” a time when most of the department gets together and discusses work, what you’ve done, what you’re doing, how to do what you want to do. You also spend a lot of time doing seemingly self-centered things, like discussing head-shots and monologue choices (these things do have an actual purpose).

Fall semester of my senior year I had a full load of drama classes. I was also helping put together my classes answer to the Oscars. I was up to my ears in drama, with a capital D. It’s a drama major’s dream, until you’re actually living it.

Living your life at an eleven isn’t all it’s cracked up to be. (Spinal Tap, anyone?)

I decided to put off any auditions or arts related jobs for a while, so I focused on long term service applications, until I printed out a couple. I was finishing my passion project and putting together a production. This “job thing” could wait until after graduation.

Right?

Yes and no.

I think you should know your limits. If you can’t devote adequate time to something you need to let something go. I like having a full plate but I’m not a fan of getting a bigger plate when the one I have is full.

However, my putting things off until I had more time turned into an unintentional gap year; there’s nothing wrong with a gap year, but when you do nothing productive with it you’ve gone from having a full plate to being stuck in a big hole.

I should have taken the advice given to me. I should’ve taken the help that was offered as well. I should’ve taken advantage of the resources around me while I had them.

I should’ve (at the very least) made a resume!

That disability support services office I had a love/hate relationship with? I shouldn’t have had such an “I can do it myself” attitude (emphasis on attitude) when they inquired about my plans for the future.

I went into the job search process assuming everything would all work out, and eventually it did. But people should learn from my missteps.

I should probably also tell you that I’m not that great at interviewing (I’m even worse with auditions) so I could’ve used the extra practice. Yes, I’m saying I should’ve applied for job I didn’t want/didn’t think I’d get just for the interview experience.

Getting a job (& keeping a job) with a disability should be no different than the non-disabled population. Now that I’ve said that, that doesn’t mean that the process is the same.

There are “extras” to consider during the search & application process:
Can I get there?

-If you don’t drive don’t assume that there are transportation options, even if there are they may not be reliable.
Can I perform the duties asked of me with no (or minimal) accommodations? This Includes “other duties as assigned.”

-The ADA outlines reasonable accommodations but I’m leaning “reasonable is up to interpretation. Therefore, look for jobs that keep accommodations to a minimum, as close to none as possible.

Is the workplace accessible for me?

-My current workplace is not accessible for most people with disabilities. When I used a wheelchair full time post-op I had to rely on my coworkers for a lot. We had to set up a mini office downstairs for me to get any work done some days. There are still days when things aren’t accessible for me, but I make do.

Can I handle the workload?

-If you’re prone to fatigue this is something you have to consider. Can you still do your job after a bad night’s sleep? And all that goes along with it?

Is this a job you see yourself in for the long term or the short term?

-If this is a position you see yourself in for the short term don’t stop looking for the long term. That short term may end up being a long one.

Should I disclose my disability?

That’s up to you. There are situations where you should or shouldn’t (as in don’t need to). Don’t lie. Most importantly whatever decision you make don’t let it be motivated by fear.

The ADA has done a lot for people with disabilities but there’s still a long way to go. You may feel like you have to work twice as hard to get half as far as a coworker. That may be true but you’ll be making it easier for the next person who comes in the door.

A similar version of this post first appeared on an old blog on March 5, 2013

 

When I Grew Up

I don’t think I can come up with the full list of things I wanted to be when I grew up. So obviously none of the have panned out. However, I’m still waiting to “feel grown up,” never mind actually be grown up, so something could pan out eventually.

There was that time that my high school guidance counselor assumed that I would become a nurse because my mother’s a nurse. My mother then asked the guidance counselor if she had ever even met me before this one meeting, because if she knew anything she knew I would never be a nurse.

Point: Mom

Then there was that one time I was reviewing my health history with a nurse practitioner when he jokingly asked why I never considered become a physical therapist, my answer was “because I wanted to learn something new,” obviously.

I think I’ve had similar goals for why I wanted to be whatever I wanted to be at any given time.

I wanted to make a difference in people’s lives and maybe help them see things a little differently.

It’s hard to say if I’ve achieved this goal but I’m working on it.

I’ve realized I spent a lot of time (probably far too much) trying to be something I’m not. It wasn’t that obvious, it was certainly subtle from my prospective, but with each change I’ve made I feel like I’m getting closer to what I’m supposed to be as grown up.

The funny thing is, if you have a weird sense of humor, I feel like who I’m meant to be as a grownup has been following me around for quite a while just waiting for me to turn around and embrace it.

So, what did I want to be when I grew up?

If you can think of it it’s probably something I thought I wanted to do for at least 5 minutes. None of it has panned out as of yet, somewhat thankfully I admit.

And let’s get real for a minute, I have CP I can’t just have any job I wanted (actually that applies for everyone regardless of ability). So, there were countless things I wanted to be when I grew up that I knew would never happen, so let’s all be thankful I was never interested in Ballet, for example.

I did want to be an Olympian. That was one of the few things I convinced myself I could do, even with CP. I just figured I’d automatically be one of those heartwarming human-interest stories you see between events and commercials.

This was before being rejected from even trying out for the swim team & before I knew there was this thing called the Paralympics for athletes with a variety of disabilities. I don’t want to close the door on my dreams of Olympic glory, but it may be a little late to make a run for Rio (and I’ll probably be too old for Tokyo?)

When it comes down to it I wanted to make an impact on people’s lives. I wanted to make them see things differently or think of something they’ve never thought of before. I never wanted to be someone’s inspiration, but if that happened along the way who am I to disagree.

Now all I have to do is grow up

*A similar version of this post was published on November 21, 2014

Why I: Am Choosing The Back Burner

I’ve been joking for a while that anyone who’s actually following my blog is watching its slow demise.

Honestly, I feel like I’m stringing people along instead of just making a decision (NOTE: if my intuition is correct tell me, especially if you have any strong opinions either way).

Here’s the truth, I’m really enjoying school. Like, if I have any free time at all I want to spend time working on assignments, at least 90% of the time anyway. Why bother putting off “little” assignments that you can get done pretty easily, if you had the time.

The exception being major papers, midterms, and finals, I’m not that far gone. And does anyone really look forward to that stuff?

If it were up to me I’d go to school full time and continue to freelance, because that’s been awesome too. Plus, my advisor, professors, and formation director are fully aware of my goals and more than ready and willing to support my simultaneous pursuits.

It’s a great ideal but it’s just that, my ideal. I have to work in order to make the rest of this work.

It’s a lot to fit in in any given day, but I’ve been able to make it work. In fact, my time management skills have improved greatly (although there is still plenty of room left to grow). So it’s not that I don’t have the time. I could make the time for something if I made it more of a priority.

Here’s the thing, my blog and who I am as a blogger needs to shift or maybe transition would be a better word. I’ve shifted topics from here to there and back again, so that’s not new to me. But I’m not getting the feeling that “Keep Calm & Blog On” is the approach I should take here.

I don’t want to stop blogging. That doesn’t feel right either. I would just be leaving a bigger gap where I’ve tried to fill a void. Nor do I want to overfill the void by telling you everything that’s been filling up my life and how it relates to having CP. I’d rather share the soapbox, if I have to stand on one at all.

So, I need to figure out what I’m doing here and more importantly why, at least when it comes to blogging.

Ideally, and I think what I’m heading towards, is more of an integration of all of my projects. Just how to go about that, if that’s really what’s meant to happen, is the challenge here.

But there’s one thing I have to do first, step back and think.

I’m choosing the back burner, because it feels right.

*A similar version of this post was published on December 30, 2014