Life After Work

Sometimes it is hard to believe that I have life after work. I work so hard and spend so much time at work that by the time I get home I have a hard time knowing how to use my time at home in a meaningful way. Often I have spent so much of my energy at work that by the time I get home I feel too tired to do the dishes, sweep the floor, or even practice a hobby. Many nights I find myself feeling drained and watching a lot of TV. To be completely honest, I am not sure if it is typical for somebody who works at least 40 hours a week to feel so drained by the end of the day or if my disability genuinely plays a role. Perhaps both?

Life after work is important because I find myself letting my spouse do many things for me that in actuality I would really prefer to be doing myself. I like being independent and maintaining the abilities I have. I cannot speak for everyone who has a disability, but I think a lot of individuals with disabilities can relate. I have spent so much of my life fighting for the right to do things on my own, without help, and I am finding myself feeling successful at work because of this. However, after work I am too tired to do things on my own and so I find myself behaving contrary to my values and personal goals.

Being a disabled professional adds a layer of complexity to an already many layered life. This is simply a reality I accepted when I decided to be a professional with disabilities. I am proud of the work I am doing. I am thankful to be able to go home and watch TV. I have the confidence that at some point I will be able to balance the amount of energy I am using at work so that I can maintain the independence I expect from myself and value at home.

Please share with me the techniques you are using to balance your energy throughout the day to make the most out of your time!

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Stay-cation

I get so wrapped up in working hard at work that I often forget to take a day off. Unfortunately, if I forget too many times, I lose the time I’ve earned, so I have no good reason not to take them. Ok, I would be lying if I said I really thought I need to take all my vacation days. I know, that sounds absurd. Think about this, I’m part of a minority group cast into two groups: wonderous, inspirational doers and miserable incompetent can’t doers. Looking at those extremes, it’s easy to see why I don’t allow myself to take vacation days until I am down to the wire of losing them. 

How many individuals in the whole population are inspirational doers, really? I don’t think there has been an official study on that, but I would guess the most common response to that question would be, “well, it depends…” Inherent in the answer (it depends) is a vast world of flexibility, individuality, preferences, and acceptance all colored gray, open to interpretation. People with disabilities are not yet invited into that world. Ok, we’re invited when it is convenient for others to invite us into that world, like when no one else wants to wash the dishes so all of a sudden the disabled person is capable of helping. Oh, but now it’s time to make cookies. Now the job is fun. Hey disabled person, you just sit there and let me make the cookies. Isn’t that nice of me?!

Yeah, yeah, yeah, I know, you’re the exception. You’re the one member of the socio-economic majority who sees everyone as inspirational. Right. You’re also full of BS. You don’t think people with disabilities are inspirational, you feel sorry for them. You feel you need to protect them. Those poor unfortunate souls. They must be so miserable. They need you to save them. There is good reason why in social work, you are culturally competent when you acknowledge your bias, own it, and actively work through, not when you pretend you have no bias. At the very core of other people outside of my minority group needing to fight my fight for me is the oppression of people with disabilities. There is no reason why other people should have to speak up for me, but people without disabilities are the ones with money and power, so I have to wait for them to invite me or allow me to participate. Thus, pretending you are my savior, in my eyes, only perpetuates the oppression of my own voice. I don’t want you to fight for me. I want to fight for myself. 

Back to this work thing. I could take my vacation days a lot more often. I could take sick days a lot more often. You probably could too. Why don’t you? Are you considered a hard worker? Are you invaluable to your workplace? Why would I want anything less for myself? The major difference though, between your hard work and my hard work is pre-existing expectations. If I let my employers, or anyone else for that matter, set my bar of expectations, I guarantee you the bar would never be as high as I set for myself. The difference being I have no mentor to push me towards high ground, because all that exists in the current world of people with disabilities is Mount Everest or a flat path in the woods. I’ve said this before and I’ll say it again; people with disabilities are as diverse as people without disabilities. The polarization of my world is exhausting. I may not be able to climb Everest, but I shouldn’t be confined to a flat walking path either. Worst part is, I am not even my own gate keeper. In the meantime, I stand on the outside begging and bargaining with those on the inside during vacation days.

Advocacy is Hard

I recently submitted a Letter to the Editor for a local newspaper and was excited to receive a phone call confirming I had written the submission so it could be published. Days after receiving the phone call, my submission was still not in print (or online). Unfortunately, it feels as though disability rights are not interesting enough to a public audience, certainly not during an election year, and definitely not when terror groups, LGBTQ issues, and guns are on the discussion board too. Oppression and marginalization of subgroups seem to ebb and flow like trends based on which group is suffering most at any given time. When it is convenient for people with or without disabilities to stand on a soap box and fight for the rights of people with disabilities, they will fight hard and say things I might not even have the courage to say. However, when an issue more trendy, more attractive, or more controversial comes along, support for disability rights goes ever so conveniently on the back burner. Worry not, for this little old disability rights problem will always be there for us to entertain ourselves!

Meanwhile, children with disabilities are growing up with the message they are not whole people. They are continuing to be surrounded by community cultures reenforcing the disabled body and mind as inadequate or incomplete. Children with disabilities are treated like second rate kids and they grow up to develop identities as inferior adults.

Thankfully, I had the opportunity to be raised by progressive parents, but even my progressive thinking parents could not save me from other kids at school, teachers, people in the community, colleagues, employers, doctors… you know… EVERYBODY ELSE! I had the opportunity to see myself as whole in the comfort of my own home, which is part of the reason I am able to extend my self-confidence into environments beyond the home, but it has not been easy and I do still struggle with it.

Soooo… Here’s the soapbox message that did not make it into the local paper after all:

I am finding it particularly difficult to manage doctors and other medical environments. I have heard example after example of other people with disabilities also struggling with medical providers. This seems to be a particularly difficult area to create a respectful and cooperative relationship. I want to be treated as the primary source of knowledge about me. I am the one who has been living with this body for 30+ years, so I think I probably know it pretty well by now. I do not want to have to see a doctor every three months just because I have disabilities and the doctor wants to check, and double check on me. I have a job and a life. I am a painfully average 30+ person, who happens to also have disabilities, but who also really just wants to not be a doctor’s pin cushion/voodoo doll. I have a whole lot of more interesting things I want to be doing with my time (and taking vacation time for unnecessary medical attention is not one of them). I find myself scheming ways to avoid needing a primary care doctor or any doctor. I am burned out from the stress of medical professionals treating me as if I do not know anything about what is good or best for me.

Blogs are excellent because they connect like minded people together for mutual causes. I was hoping I would have the opportunity to extend the advocacy I am doing here into print, but I guess I just need to wait until caring about disability rights becomes a trendy topic again.

Body Image

I remember reading an article when I was a senior in high school about taller people being more successful than shorter people in the workplace; thus began a huge hurdle in my body image. I cannot remember where I read this or whether it was even a legitimate claim. Nevertheless, the memory of shame and disappointment in the irreversible reality of my stature stuck with me through undergrad, through grad school, and every interpersonal encounter I’ve had since. To be fair, I think it would be realistic to factor in pre-existing issues I may have had due to my disabilities being so visible, but reading an article about it certainly felt like hammering a nail into the coffin of any positive body image I may have scrounged up over my teenage years.

Fast forward to the present and I am working full time, but the shadow of doubt in my abilities still follows me. As a professional with disabilities, I am no stranger to putting 200% effort into my work just so I can be sure everyone around me is taking me seriously. Why then, do I still worry constantly that people are not taking me seriously? The answer is simple: Society continues to tell children they have to be perfect inside and out in order to be successful. This means I was imperfect from the get go and therefore assumed to be a failure (or incapable of true success) all along. Sounds to me like the game is rigged, big time! Employers are really getting a good deal out of me, because I am working hard, performing higher than average – since, you know, I’m disabled so I’ve got to make sure I’m doing better than average in order to be viewed as an equal – and not expecting commensurate compensation as I have been taught society views me as inherently inferior to my colleagues.

Remember the post about resilience? Body image is difficult to manage even for people who do not have disabilities. Throw a disability in the mix and you got yourself quite a hurdle. I have definitely come a long way in redefining my body image to allow for the realities of my disabilities, including my stature, but I still find myself worrying or feeling defensive at times. It’s one of those inner battles that people with disabilities sort of feel like they have to fight in silence, particularly at work.

Hopefully, there will come a time when having a disability does not mean a person is either completely dependent or Stevie Wonder. Again, society needs to expand on the definition of the disabled to include a wide spectrum of abilities consistent with the reality that humans are diverse, even the disabled ones. Normalization of not having preconceived notions of ability would level the playing field tremendously.

Financial Planning

Now this is a conversation unique to individuals with disabilities who are also working professional jobs and are confronted with the task of financial planning. I am in no way trying to give financial advice with this topic. Rather, I want to uncover a reality I am facing that makes financial planning stressful and feel somewhat impossible.

First, I am planning for a future I am not at all entirely sure I will have the benefit of living. From day one, yes – birth, I have been living with medical issues more significant than a majority of others my age. If the trajectory remains the same, I suppose it is fair to assume I am either going to require a significantly higher degree of medical care or I will not live long enough to worry about it. Regardless, I need to acknowledge the reality I may not make it to retirement. Thus, the primary stressor of financial planning is the unreliability of my body. I have no clue when it is going to quit on me and I have no way of predicting how my unique medical issues will evolve. Time will often tell, but that does not help when I am trying to plan ahead.

The second aspect of financial planning is largely affected by the first. I do not know how much time I have to live, so I find myself not really sure what is most important to me to invest my time and money. I know my job is a source of satisfaction and enjoyment in my life, as is my husband, but what about experiences, entertainment, or hobbies? Of course, living for today is useful for today, but what if I do live into retirement and I have not saved enough money to afford the medical care I would need? The “what if’s” are endless, but they are mostly legitimate concerns. This makes determining my priorities now versus preparing for the future all the more stressful.

Third, I enjoy relaxing and having time alone to, you know, think pensively about, well, everything. Nevertheless, I have brothers, sisters, in-laws, nieces, nephews, and friends… oh yeah, and that husband… who all want a piece of the action. I somehow have to find time to maintain meaningful relationships and carve out time to myself for pensive thinking. Did I mention I might not make it until retirement?

Ok, so I am supposed to plan for a tomorrow that may never come. If I do make it that far, I will likely have more medical needs than my peers, which will translate into higher bills. I also have to create a today worth living. I suppose the answer to this dilemma is the same as investment in general – diversify, diversify, diversify. Do it all as much as possible to minimize the risk of regrets.

 

 

Nightmare for Me, Reality for Many Others

The nightmare (and yes, I actually had it last night):

I lost or left a job and frantically looked for a new one. I was hired as a CNA in a nursing home. I walked the hallways looking in at residents and other CNAs. It suddenly occurred to me that I was not being asked to do anything. I was roaming the halls shift after shift and other staff were just walking around me, smiling, striking up small talk… But never asking me to do anything. I felt confused and angry as I questioned in my mind why I was getting away  with not doing anything. I started to walk out because I started to feel guilty and stupid just standing around. Before I got in my car to escape, I decided I better go back and talk to a supervisor. Maybe this was all just a big mistake? Maybe they just hadn’t yet decided who I’d be working with yet? I talked to the supervisor and she stared at me blankly. She smiled and walked away. Everything stayed the same. Staff continued to walk around me. The confusion, anger, and horror boiled inside me, ultimately waking me.

The most horrify aspect of this dream is the fact that I actually have experienced such a scenario. I have never applied for a job I physically could not perform, but I have been in workplace or volunteer scenarios where other people would just walk around me. I guess they somehow thought just having me be there made it inclusive. It was not. It was humiliating, insulting, and just plain absurd. I would never apply for a job or volunteer for a task I could not do. It is truly amazing though, just how many people make assumptions about what I can or cannot do anyway, as if I would purposely humiliate myself. Obviously, I would not.

Like I said, the particular events occurring in my nightmare have not happened, but the feelings I had most certainly have. As a professional with disabilities, assumptions are made about my limitations all the time. Most often, people assume I am much more incapable than I am in reality. I am usually pretty good at shaking it off, but my nightmare demonstrates the horror exists and does sometimes haunt me.

Resilience Required

Living with disabilities takes a tremendous level of resilience. The simple acting of being alive is traumatic, from the societal oppression and marginalization to the internal conflict between self respect and limitations. I have thought a lot about what it truly means to experience the life span as an individual with disabilities and I have come to the point where I can finally admit to myself that living with disabilities is traumatic. Some people might argue using the word ‘traumatic’ is too extreme (and I can only speak for myself), but I have a feeling that a significant number of other people with disabilities would concur with me.

I recognize the topic of this post lacks positivity, but the realities of even successful professionals living with disabilities needs to be acknowledged. I posses a competitiveness, a drive, and a need to prove to myself I am equally human. The battle is both internal and external, resulting in a constant reliance on my resilience. However, my resilience never has the opportunity to rest and that is what makes living with disabilities traumatic. Society labels me one of two extremes, either special or dependent, so society presently allows no middle ground, no average, no normalcy. I am constantly fighting to prove a middle ground exists for people with disabilities while society refuses to acknowledge it. Especially during times of high competition due to the economy, the belittling and oppression of people with disabilities becomes a convenient way to push some people out of the race. Having a disability morphs into a relevant argument against inclusion without any contest because it is convenient. That is right, it is easy, and the only people who get hurt are people who cannot do things anyway. After all, that is why we are called dis-abled.

Society makes discrimination, humiliation, and oppression of people with disabilities so easy. It is traumatic. Only a limitless supply of resilience can handle the relentless trauma of living in a society where having a disability means being a pioneer or incapacitated.

If you are aiming for normal, you are not wrong. Society is wrong about you. Keep up the good work, pal.

Building Strength to Maintain Positivity

Building anything takes time. If you are seeing a project completed in a short amount of time then that project most likely has a big support system. I do not consider myself someone with a big support system, so I recognize figuring things out on my own is going to take time, patience, and persistence.

Building strength refers specifically to your ability to endure, remain patient, and persist with yourself, others, and the situation. Having a disability makes it all too easy to play the disability card or to give up completely when things feel like they are not happening quickly enough. To play the disability card is to give up your independence, something I personally aim to avoid as much as possible (mostly because I hate being told what to do). Furthermore, to give up is as impulsive a decision as throwing a tantrum or those doughnuts I ate after dinner last night.

Building strength is a necessary first step toward maintaining an inner positivity. The second step is narrowing in on one piece of the pie at a time. Do not try to accomplish everything at once, lest you are putting yourself at risk of finishing nothing. This is particularly true if you tend to struggle with finishing tasks on a regular basis. Avoid the temptation to leave something unfinished, even if something else feels more important. The ability to finish a task before moving on to the next one is going to keep building you up by adding a sense of accomplishment, pride, and self-confidence.

Now comes the step that brings it all together: be your own cheerleader. Especially in the world of the disabled, it seems as though more people are trying to prove how much people with disabilities cannot do as opposed to accepting the longer list of things they do, and do well, everyday. We are all caught up in our own sob story, and some people are going to be able to listen, care, and provide support despite what they themselves might be facing in their personal lives. More often then not, however, you would be sharing your story with people who are not listening, but rather thinking about how your story is not as bad as their story, or their friend of a friend’s story, or their great uncle’s story. You get my point. Most people are going to search their mind for a one-upper to demonstrate to you or to prove to themselves their sob story is worse. The individuals who are capable of providing quality listening, caring, and support despite their own issues are few and far between. Thus, you are going to need to develop the ability of carrying yourself through the “between” periods. When you cheer on yourself you provide yourself encouragement, you give yourself rewards when you score points, and you do a little dance for yourself at half time just because it is fun. Your half time dance can be anything you want it to be such as a half gallon of ice cream, painting, writing, junk TV, whatever. Keep the pep up, even if you have to fake it, because you are going to need to be able to be your own support figure at times. That is just a fact.

In reality, the ability to build strength and maintain posivity are  inner skills no one can develop within you. If you feel like you struggle with these skills then it is worth taking time to work on them, practice them, and master them. Your ability to endure, persist, and have patience with yourself others, and situations is absolutely vital to long term posivity.

Learning to Relax

If you are someone with a disability who is working or engaged in meaningful life tasks (such as art, writing, volunteerism), then you are most likely someone who is used to working hard. Skills and accomplishments are born out of hard work or natural ability, both of which are equally to be realities for people with disabilities as those without. My point is, if you are reading this blog, you’re probably someone who needs a reminder now and then to take time to relax. I know I do.

What does relaxing even look like, though? Relaxing is letting yourself slow time down, both in body and in mind. So much of my mind is racing with plans for the future. A majority of my body is racing to keep up with my mind. The future tense is not a bad place to be. I feel more productive and proud of myself when I focus my thoughts and actions on where I am headed. Nevertheless, recharge is necessary and the 6 holidays I get a year is not generally enough. Weekends too, seem to fly by and before I know it, I am right back at my desk as if I never left. 

As with everything in life, balancing the race to the finish line with finding enjoyment in daily life is a constant pendulum. Even when I try to make a routine out of practicing mindfulness, I am seldom successful with maintaining it before my mind snaps back into forward thinking. 

I can’t tell you what will work for you, but I can tell you the kinds of things I do to incorporate the present tense in my daily life. First, I consider the red flags for when my body is sending the message to slow things down a bit. Second, I decide ahead of time to make time, almost like setting an appointment for myself, to just relax and do enjoyable things. Third, I know the kinds of activities that will keep my mind racing forward and the ones that will allow for calmness of mind. Last, I focus on sensory relaxations  and activities first such exercising, cooking, or massage. Like I said though, everyone is going to have different interests or different needs. 

Ultimately, I start to feel frustrated and robotic when I don’t take time to relax. Even though relaxing is not my default setting, I make time for it and the effort usually pays off. My biggest fear is dropping dead and not having taken enough time to relax and enjoy the present moments of day to day life.

The Disability Card

I do not consider myself a gamer, but I have enough friends who are to know every card in a deck has strengths and weaknesses; it simply depends on strategy. The disability card is best known for “I can’t do that because of my disability.” Other common uses of the disability card would be “My life is worse than your life because I’m disabled” and “Things are so much harder for me because I am disabled.” You might even hear someone use it to convey, “I work so much harder than a lot of other people because I am disabled.”

Use of the disability card is most often done with honesty, but honest is not always conveyed in ways that maintain dignity. Sometimes people make powerful statements with passion and later regret the way they communicated their messages. The disability card holds a significant amount of passion in it’s message. The individual playing it needs to be aware of the emotional tone and potential interpretations the disability card evokes. 

The disability card is either a plea for help, a justification, an excuse, an opportunity to vent, or a call to justice. To play the card effectively, you have to be aware of your intent. Society already knows having a disability stinks, so the disability card is really an announcement everyone already knows. In addition, no one at work is going to directly disagree with it, but if you use the disability card at work then you might find people taking the long way around your desk to avoid you. 

People with disabilities want to be treated like equals and with respect. If people without disabilities are constantly facing the disability card in conversation or task completion, the situation becomes a me versus you, disabled versus non disabled encounter. Tension around the person who plays the disability card is often high. People with disabilities are more likely to be treated as equal and with respect when they can remain approachable.

All I am saying is this: avoid using the disability card unless it is absolutely necessary and does not make others feel like you’re a jerk.