Going it Alone

I am rarely alone. At work, I engage in conversations with colleagues and clients all day. At home, my husband is generally present, because we carpool to work, so he’s at home when I am. You get it; I am in the presence of at least one other person all day long.

The kind of loneliness I experience is directly related to being a 30-something professional with a disability who has to figure out solutions individual to me on my own. I could ask colleagues and family for help, but then I would be asking them to understand my needs more than I do. More often than not, collaborating with others on solutions pertaining to my disability usually ends in me feeling annoyed I wasted my time and the other person’s by asking for advice in the first place. The few times I do not end up feeling annoyed are the times I end up infuriated by answers that feel absurd or belittling.

Perhaps the biggest barrier to finding someone who can effectively provide mentorship and support is the limited number of individuals in professional positions who can relate. Within my workplace of about 50 employees, for example, I am the only individual with a significant, life long, very noticeable disability. It is just not an issue for colleagues, so it does not make sense for them to have answers for me. Fortunately, I have had the opportunity of meeting several professionals with significant disabilities. Some are more approachable than others. I try to keep communication open with those who I admire so I can tap into their knowledge when I need support. Nevertheless, a majority of supports I find are outside of the workplace.

Physically, I am seldom alone. Emotionally, I feel very alone most of the time. Keeping up with the rest of the world is a completely realistic expectation for me, but it does require a lot of unique self-efficacy skills. Motivations come from within and endurance is vital.

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Managing Feelings of Pride

I know it might sound absurd to suggest too much pride could be an issue, but it can be when the level of respect and cooperation received at work does not translate into personal life. At work, my educational level and position result in some staff treating me with more respect by default, because the responsibilities of my position place me as a source of feedback, support and guidance for others. I am accustomed to a general sense of cooperation and compliance at work with what I have to say, meaning my values, opinions, education, and capabilities are routinely heard and acknowledged.

With the constant affirmations at work, I often have to remind myself outside of the workplace that individuals at home and in the community have a different kind of relationship with me. When I go shopping, for instance, other shoppers will often make light hearted comments about my disabilities, because my disabilities are physical and obvious.

Here are some examples:

“Wow, are you going to stay that little? You didn’t eat right.”

“You’re a short one. Aren’t cha?!’

“Here, let me get that for you.” (No, I didn’t ask first.)

– Insert clerk awkwardly handing me my shopping bag at check out. –

“Do you need someone to carry that for you?”

“Do you need a basket?”

Of course, I believe I am capable of recognizing when I need a basket and can obtain one for myself, so you can understand the feelings of insult when shopping becomes a defensive activity as opposed to a pleasurable outing. However, the individuals making these comments do not know me personally. In fact, most individuals I encounter in the community have never seen me before and are making a momentary decision to offer help or process the situation based on the visual evidence that I do not have all the nuts and bolts compared to a majority of others. Furthermore, my disability is visually unique, even compared to many other disabilities, so when people are seeing me for the first time, they are often seeing the kind of disability I have for the first time as well.

Family encounters are different, because family members know me almost completely, so it can be even more insulting to hear light hearted joking or comments from siblings, parents, or relatives. Siblings might make jokes and parents or relatives might make assumptions that could potentially cause me to feel left out of an activity if I allow the comment to insult me. When I allow the comments to insult me, I separate myself from the activity and I separate myself from the individuals who made the comments. I draw attention to myself and further exacerbate the once minor comment into an elephant. At the point when comments become elephants, people are embarrassed. I am embarrassed. They are embarrassed. A formerly enjoyable moment feels impossibly miserable.

I am one of those people who believes in self-fulfilling prophecies. I believe that life will be as miserable or as wonderful as I decide it will be and I refuse to allow my life to be miserable. I do not want that for myself, so I spend a lot of my time exploring opportunities for positive outcomes or reflecting and learning from mistakes. I cannot change my disabilities. Living a wonderful life means becoming comfortable in my own skin, as I am, as I will be until the day I die. I need to play the game with the cards I was dealt. The phrase “mind over matter” exists for a reason, because it is tried and true.

Individuals in the community are not insulting me on purpose. They are processing what they see and responding. I cannot allow myself to be insulted by the learning experiences of others. I need to be able to respond respectfully, often sacrificing my pride. When I respond respectfully, I become approachable. People are more willing to ask questions, engage in dialog and learn from me when I am approachable. I want people to approach me so that they can get to know me better. People who know me better have more knowledge about my capabilities and are less likely to make comments that feel insulting.

Here are some examples of common responses:

“Haha, yeah, I know! Thanks, but I am Ok.”

“Sure. Thank you so much.”

“You’re right, I am ____! Haha. I have a lot of years of practice though.”

“Hey, thanks. You know, I am actually OK to get this on my own, but if I do need help, I will definitely come find you.”

People are going to make assumptions and your best response is to provide opportunities for others to feel comfortable talking to you and asking questions. If I think I am going to get dagger eyes or a scowl, I am going to steer clear. The problem with using anger to protect yourself from insult is the gap in knowledge left for individuals to fill with their own assumptions, which may or may not be accurate. Do not give other people the opportunity to answer their own questions about you. Show them, answer them, and engage them with patience and compassion.

Here are some assumptions you can make that will help you:

  1. People are curious about you and want to know about you.
  2. People do not know you like you know yourself.
  3. Winning the minor battles does not mean victory for you and should not be your priority.
  4. Pride is not more important than compassion.
  5. Creating an elephant better be worth the pride you sacrifice. Elephants only matter if the issue will matter many years from now.
  6. The people who know you well might still need teaching, and that is OK.
  7. You are allowed bad days, but you should always reflect on them and learn from them.
  8. You are interesting and you matter.
  9. No one has any more of a voice or any less of a voice than you.
  10. You decide whether your life will be miserable or wonderful.

Self-Image

I spend so much of my time feeling like I have to prove myself capable that I forget sometimes not everyone views me as incapable. The notion I need to prove myself capable is not without just cause. I can provide numerous examples encountering people who have treated me as incapable in one capacity or another. I had a supervisor once who would get onto his knees to talk to me. I had coworkers assuming I was almost 10 years younger make statements to me about not knowing what it is like to be a “real adult.” I have had people tell me, “well, you probably can’t do that…” The list goes on, but the fact remains, most people do not treat me as incapable. Enough people have and enough people do treat me as incapable regularly, but most people do not. Nevertheless, I stand on guard for the unexpected moment when I need to overcompensate or protect my dignity. How then, am I supposed to know when to feel confident and put my shield down?

The answer is the common cure for most social ailments: Leading by example is the best way to “prove” anything. I tend to keep my shield up at work. In other words, I put a lot of energy into actively proving myself, not as an individual with a disability, but rather as a professional who wants to be good at my job. Thus, my focus is not specifically on promoting my capabilities as an individual with disabilities, though I ensure the message is an added bonus by simply feeling good about the work I am doing. When I focus on doing my best, other people notice and the image colleagues and supervisors have of me reflects what I am doing as opposed to what I might not be able to do.

Remember those bad days I talked about? The bad days are when insecurities I may be harboring inflate the shield and result in misinterpretations of how others think of me or view me. I become more easily defensive or insulted by comments, jokes, or glances that may have had nothing to do with me at all. These moments of negative self-talk combined with instances when individuals truly are discriminating make it difficult to feel like I can put my shield down even for a quick rest. However, resting the shield needs to happen, because constantly standing guard ready for attack is just not healthy for anyone.

So when does the shield go down? AT HOME. Your home needs to be the place where you can be as able or disabled as you choose. Your shield should be up at work, because you should be doing your best at work regardless of any disabilities. Home is your place to rest, just as it is for anyone else.

Be A Problem Solver, Be Needed

My colleagues can perform a few office tasks that take me longer to complete due to my disabilities. Not being able to do some things expected of other employees can often feel embarrassing. Everyone wants to feel competent at work, so when a disability gets in the way of completing tasks, it is frustrating, You cannot change your disability, but two solutions seem to have made a positive impact on my own self-image and self-confidence in the workplace.

Just to put my example in perspective: I work with four other individuals who have exactly the same professional responsibilities. Although my colleagues and I sometimes interact and cooperate, most tasks are completed independently of one another. Thus, I manage my own time and can plan my day in my own way to maximize effectiveness.

My primary goal is to figure out ways of completing tasks without having to ask for help. Sometimes I may need to ask for assistance, but I make sure to exhaust all possible alternatives before I put myself in a situation where I am waiting on others to be available to help me. I like being independent, so taking a few moments to figure out an alternative solution that fits my needs is worth my attention.

However, by taking the time to find creative ways of completing tasks on my own, I might, unlike my colleagues, need to use up some precious extra time. How am I supposed to keep up with my colleagues if they do not have to worry about making adaptations for themselves? Sometimes I do not keep up. For example, I definitely do not type as fast as some of my colleagues (though I guarantee I am a better writer).

I need to be aware of the negatives, though my real focus is on building an equal number of positives, and hopefully more, to compensate. I know I am a problem solver who is willing to take chances and cooperative with the collaborative process. In addition, I have observed my colleagues over time to learn more about their skills so that I could strategically gain skills in useful areas that others could not provide. I picked an information niche and I am now a go-to colleague for topic specific information.

In sum:

  1. I make sure I am maintaining as much independence as possible so that I do not have to experience the guilt and embarrassment of needing assistance. I only ask for help when I am absolutely certain I cannot find a way to do something on my own.
  2. I make sure I stay relevant and useful in ways my colleagues and peers cannot fulfill so that I can feel confident I am contributing to my workplace by offering a unique knowledge base or skill set.

Keep It to Yourself Sometimes

We all have good days and bad days, and by “we all” I mean all people. Some days, usually when I am overtired, I carry an internal attitude of “if you think your day is bad, try living with <insert disability here>.” The problem with actually saying such momentary reflections out loud is how it reinforces exactly the “woe is me” attitude stereotypically expected from individuals with disabilities. It is most certainly true that my disabilities make it more difficult to complete tasks using exactly the same processes as individuals without my disabilities, but I am also certainly capable of coming up with creative solutions to complete those tasks anyway. Nevertheless, I do have moments when I genuinely feel like it would just be easier if I was not disabled, which should be obvious.

The disability platform is an obvious one, and few people without disabilities need to be reminded of how dreadful it must be to meet each day with such tremendous disadvantage. I mean, why else would individuals with disabilities have acquired popular praises such as “You’re not disabled. You’re just special.” I am not special and I am most definitely living with a disability. Come on, though, what can people without disabilities really say? No one wished our disabilities upon us. We simply are the way we are and sometimes we have bad days when we are not in the mood to find creative solutions to complete those tasks anyway.

In the workplace, some people might care, but a majority of people are doing all they can to keep up in life themselves. Everyone has a problem of some kind (whether acknowledgement is present or not). Living professional lifestyles as individuals with disabilities requires a great deal of resiliency. We are never wrong to think or feel the way we do about ourselves, but we need to remain conscious of what we say, how we say it, and our audience. Remember, a majority of other people are already expecting us to think and feel like life is harder for us. We cannot expect employers and colleagues to trust in us and treat us as equals if we are contributing to negativity in the workplace around living with disabilities. We do not need to waste any time emphasizing the negatives. No one needs help thinking of the negatives! We need to demonstrate how effective we can be, even on bad days, even when we are thinking and feeling negatively about ourselves. We must take actions that reflect a positive attitude towards individuals with disabilities in the workplace by keeping the negative thoughts and feelings about our disabilities out of the workplace.

However, one instance when sharing with employers or colleagues about the trials and woes of living with a disability might be useful would be during a meeting, conference, or training when you have been asked to share specifically on that topic. Another instance might be if you consider a particular colleague to be a confidant. Of course, you would want to be perceptive to any point in time when your confidant expresses feeling inadequate to provide effective feedback regarding living with a disability. Furthermore, sometimes a colleague or employer might initiate the conversation, and in that case, it would also be appropriate for you to engage in explaining the common barriers to living with a disability. Although, in both the first and third case, you would want to be extra careful about emphasizing the small number of things you cannot do when you could be sharing about the things you can do.

Sometimes it would be nice to be able to just talk about it openly and not feel like we have to just deal. Professionals have to just deal with a lot of issues and we need to know when it is appropriate to share and when we should rely on our internal coping skills to get us through bad days. If we cannot rely on our own internal coping skills, then we should seek appropriate supports, ideally outside of the workplace. Turn to friends, family, counselors, mentors, and the internet before you bring those problems no colleague can solve to work.

Finally, and I cannot say this enough, INDIVIDUALS WITH DISABILITIES NEED TO DEMONSTRATE AND EMPHASIZE THE POSITIVES AT WORK. Disability rights have made significant improvements over the past 25 years, but there is still work to be done and we are all responsible.