I don’t know what to call this one, but it might help repair your relationship.

There were these popular storybooks when I was a kid.  They had pages of stickers in the back, and each page had indicated spots where you could put the sticker that completed the illustration and added too the story. I didn’t like them.  Stickers stressed me out because if you put them in the wrong place or changed your mind, it was too late. You could remove them, but the stickers would curl and never really stick again. The paper would tear and lose its smooth, fresh surface to a permanent scar.

In the grown-up world, our relationships are like those storybooks. We start with the cookie-cutter format society supplies, and then press the messages we absorb from our family, community, religion, culture and experiences to our lives like stickers.
We affix our dreams, needs and expectations to another human being who is just as fragile as we are. As time passes, things change. We are changed.
One funny thing about people is how we put all kinds of emphasis on teaching our kids how to get along in school and in business, but instruction on how to get along with other people tends to start dissipating after kindergarten. We don’t learn to talk about things in an authentic, open way.
Overwhelmed, we start pulling off our stickers, not understanding where it all went so wrong.  Hurt, bitterness, disappointment, anger multiply and wound. Friends, the remedy and prevention for this is trust. Trust is rebuild by communication.
It’s fun when you enjoy all the same things and laugh at the same jokes. It feels good when all our needs are being meet, but real life is a lot messier than that because we are all needy and flawed. A relationship is fulfilling and solidified when both sides are giving. When each spouse knows the other is equally invested, they’re both willing to give more.  Over time, the love will start piling up. The sun shines brighter, food tastes better and life’s blows are a little softer.
If you are in a struggling relationship, I encourage BOTH of you to try this: For six weeks, live every moment for your partner. Be courteous and kind. Try to anticipate their needs. Save the last snack for them. Learn their favorite song, and ASK why it’s their favorite. Start saying things like “Wait, I’m confused, can you say that again?” or “Maybe I misunderstood you”. “That sounded kind of mean. Is that really what your meant?” is really useful. If you get frustrated say so, BEFORE it escalates. LISTEN without being defensive. Ask questions and be EMPATHETIC. Seek understanding instead of validation or gratification.
During this process, at least one of you will screw up at least once. When it happens, be kind and forgiving. Someone should apologize without deflecting blame, and the other should forgive and LET GO! Don’t keep a record of every fault. Remember your spouse can’t read your mind. We’re all trying to figure it out as we go. Be gracious, merciful and humble. It will only work if both of you participate. Also, don’t make any major decisions about your life before you read The Velveteen Principles.

 

Will Work for Dignity

There’s a look I often get when entering a room full of strangers, particularly for a job interview. I politely pretend not to notice while they mentally adjust to my admitted awkwardness. I see their brains churn as they strain to recall all the laws and best practices they think will keep me from suing them when they don’t hire me. They either rush through the interview or began to hang on my every word and shower me with glowing reviews because I’m way smarter than expected and so inspirational. Then I don’t get the job. It’s all really silly, and here’s why:
  • I’ve developed the qualities that make me a stellar employee because I’m disabled, not in spite of it.
I’ve probably hit on this in previous posts/rants, because I say it constantly, like one of those baby dolls that spout prerecorded phrases when you pull the string. Every detail of my life requires a level of logistics I’ve come to realize a lot of people just aren’t capable of. Every minute of every day I’m scanning my surroundings for possible trip hazards, ramps, elevators and alternate routes. At the same time, I’m anticipating obstacles and developing strategies for accommodating myself so smoothly, you probably won’t even notice.
For you, the employer, this translates to creativity, a knack for avoiding the avoidable problems and solving the unavoidable ones, attention to detail, safety and a talent for streamlining policy and procedure.
  • I have no recourse if I “slip and fall”.
It’s true that my disability makes me much more likely to fall than a typical employee. It’s also true that I make it look stylish. I’m well trained in the art/science of falling, thus in more than 30 years of crippledom, I’ve never sustained a significant injury in a fall. Furthermore, as a responsible adult who pays her own bills, I’m not going to put myself in a situation where I might sustain an injury that puts me out of work or jeopardizes my mobility. Trust me, I have more invested and more to lose than you do.
Let’s just pretend you hire me (see below for contact info), then I trip over something at work and …I don’t know…break my arm and try to file a workers’ comp claim. You’re insurance company will automatically reject it, saying I’m predisposed to fall. Then, I could only take you to court where the judge would require me prove that my pre-existing condition didn’t cause the fall, and I can’t definitively proof that.
I was once involved in a head-on collision that basically decimated both of my legs, resulting in several surgeries and a long, incomplete recovery. Even then, the court wanted proof that I was any more disabled than I had been before the wreck!
  • Antidiscrimination laws often have no teeth.
After a couple of great phone interviews, I showed up to a prospective employer for a skills test. I entered the door marked accessible to find myself in a tiny room with nothing in it but the huge flight of stairs that lead to the office and testing area. I explained to the manager that wouldn’t work and tried to convince him there had to me another way to get where he wanted me to go. He kept ensuring me that wasn’t the case and insisted I take the test anyway. I explained there wasn’t much point if the test was up those stairs. We continued like that for a while, and I left without taking the text.
The Equal Employment Opportunity Commission investigated and determined that I had obviously been discriminated against, just not legally. They said I should have taken the test, then they would have quantifiable evidence the company hired someone less qualified than me. Let that sink in…the test was UP THE STAIRS…no elevator.
If they had ruled in my favor, the EEOC would have issued me a “Right to Sue” along with supporting evidence from their investigation. I would have to present that in court, and the best I could hope for is to be forcibly hired, maybe with a little back pay. Talk about putting a damper on the work environment! Then they could fire later me for pretty much whatever they want.
Like so may of our societal ills, all it takes to quell hiring discrimination is a little practical education. All my life I’ve put considerable effort into being smart, educated and capable, knowing I might be perceived to be less hirable than my peers. So far it seems no amount of preparation would be equal to my greatest barrier: public misconception.

The one about that cop…

I have nothing but respect for the spirit of law enforcement. They’re subject to danger, sacrifice and often witness humanity at its lowest. I’ve heard it argued in recent months it’s that constant exposure to negativity that turns some cops bad. I suspect there’s some truth to that, but power and authority are often magnets for the kind of person who will abuse them. That person would still be a bully in any station or scenario life leads them to.

 I recently had my own (extremely minor) altercation with a local policeman who got very tyrannical with me very quickly. Of course I was never in fear for my life, because I’m the whitest white girl ever (not to mention the least threatening). Still I can’t describe the intense feeling of vulnerability and injustice that came over me and still hasn’t left. I won’t judge his colleagues by his behavior, but my trust and respect won’t be automatic anymore.
I’m concerned about what might happen when that officer is called upon to interact with someone who is not a white girl in a wheelchair.
Race isn’t the only factor in police misconduct, but it’s past time to stop denying it’s a big one. A exasperatingly over simplified “info graphic” about how color has nothing to do with the alarming number of people killed in police custody has shown up on my Facebook page six times in less than a week. Every single time, it’s posted by a white man. These are good men who I dearly love, but like so many others they’re blinded by their fortunate position. As with every other brand of discrimination, the only ones who think it’s NOT a problem (or even a possibility) are the ones who aren’t affected. If you guys would learn to put yourselves in someone else’s shoes, it would CHANGE the world!
I’m sincerely sorry for all the honorable cops. It seems like it would be in their best interest to weed out guys like that. Maybe the job attracts narcissists, or maybe it breeds them. It’s a purely academic, chicken vs. egg conversation that will always circle back to the same problem:  destruction is inevitable for a society that can’t trust those who swear to “serve and protect” them.
Read between the lines of political agenda, and do the math of history and experience. Take an honest look at the statistics. It all adds up to gross injustice in a country that claims “justice for all”. If you can do that and still say color doesn’t matter, it’s not because you’re ignorant, it’s because you’re not comfortable with the prejudice you harbor, but you’re not willing to let it go.

5 Suggested “Value Tales”

My Grandmama read “Value Tales” to me when I was little. There’s a whole set of them. Each story is about how real, historic figures and their theme-appropriate imaginary friends demonstrated a specific value like honesty, kindness, determination, etc. I’ve lived a little now, and had the chance to apply some of those lessons and a few others the books didn’t mention. Here’s some suggestions, in case they ever decide to expand the series:
1.The Value of Self-Awareness – You are entitled to every single one of your own feelings. You are also free to express them however you deem necessary, but as we know, to every action there is a reaction. So before you act or react, take a minute to name what you’re really feeling and evaluate what really made you feel that way. For example, maybe there’s somebody you think you don’t like. If that guy has done something to legitimately earn your hatred, you should be able to draw some pretty straight lines to why you feel that way. Do you actually dislike the person, or do you dislike the way you feel when he’s around? If you land on the latter, are you reacting to something that person did, or to some insecurity about yourself? It’s quite a labyrinth, and emotions often disguise themselves, but having that knowledge gives you power to construct your life! In the end, out lives aren’t made up of what happens to us, but how we FEEL about what happens and how we react.
2. The Value of Empathy – For better or worse, everybody filters the world through the lens of their own baggage. Every experience adds a layer that either clarifies or blurs everything that happens next. IT’s impossible to really communicate with someone without putting yourself in her shoes. I’m certain that would go a long way toward dissipating some of the world’s most insurmountable problems. We’d all be a lot nicer if we stopped to consider how it feels to be the other guy.
3. The Value of Personal Responsibility – OWN YOUR STUFF! What you love, what you hate, what you believe, how you feel, ALL of it. It’s your privilege AND your responsibility. Blaming others for your emotions and actions eats away at your integrity and hands them control over your life. It says a lot more about you than it does about them. Nothing in your life will improve until you take responsibility for it.
4. The Value of Trouble Shooting – Learn how to figure things out. Look for clues. Read the instructions. Ask questions. Seek information and put the pieces together. These steps translate to problems as minor as unjamming the copy machine to scarier situations like finding a job. There’s a lot of freedom and confidence to be gained by knowing you have some tools to help solve whatever you’re up against.
5. The Value of Discernment – We are living in a time of unprecedented access to information. Along with that comes exposure to the agendas and opinions of all kinds of folks who have no shame about twisting the facts in their favor. The trick is to develop a set of mental filters to help you sift through the baloney and get as close to the truth as you can. What the world needs now is way less deceit and misinformation. You can be part of the solution by refusing to accept everything that’s fed to you. Learn how to do your own research, and verify your sources. Don’t spread that stuff around; it’s quickly junking up the world…and that’s where I LIVE with the people I LOVE. The people you love live there too. STOP IT!
The difference between living a reactive life where you’re a slave to your circumstances, and having a deeper, more meaningful, productive experience is developing these tools.

 

The A.D.A doesn’t cover that.

Yesterday was the 25th anniversary of the American’s with Disabilities Act. Like every law written and enforced by flawed human beings it could use some serious tweaking, but it’s important for you to understand it’s the only thing that gives people with disabilities a decent shot at participating in public life.

I was 11 years old when the A.D.A was passed, and totally unconcerned about the law because youth and ignorance sheltered me from absorbing the full blow of discrimination. Back then (as with every kid) it was all about getting to do everything the other kids were doing. My biggest concern was getting left out. That continued to be the case in my 20s when the other kids were off to college and their own apartments, and even into my early 30s when my peers were starting to settle into their careers.
My most recent round of job searching forced me to get honest with myself about how disability has affected me economically.  I refused to entertain the idea when I was younger, because I felt like I still had time.  I was confident someone would give me a chance, and my skills would win over any concern an employer could have. Now I understand that otherwise reasonable people will panic about justifying me to their boss, and the thing about me that freaks them out is the only thing I can’t change.
Now I’m 36, and my focus has started to shift from getting the same opportunities as my peers to what my future will look like if I don’t.
 I have two degrees, stellar test scores, a list of well documented, in-demand skills and exactly two years and two months of full-time employment IN MY ENTIRE LIFE.  There are only three short years between now and when my earning potential will statistically begin to decline.
I’ve rarely made it paycheck to paycheck, so if I manage to save any money it’s easily lost to any extra expense that comes up. Many times I’ve relied on credit cards to fill the gap. I have zero retirement, zero life insurance, zero long-term care. The kind of preventative care most insurance policies cover doesn’t include the ongoing physical and occupational therapy people like me need to function optimally. It’s not likely I’ll remain independent in my later years, since I could already use some help. What will happen to me?
What’s that you say? I can always sit home and collect Social Security Disability? Even the maximum possible benefit amount is not enough to pay rent in almost any market, and I haven’t had the chance to pay into the system much. Unemployment paid me almost double with my SSI check would be. Don’t get me started on the frustration and indignity that’s part and parcel of that system.
At some point, just about everyone I try to enlighten on this subject has told me it can’t possibly be the biggest factor in my under-employment. I wholeheartedly accepted that, because the alternative is terrifying. Unfortunately, my experience and this research from The Center for American Progress confirms the problem:
One in 5 Americans have some form of disability that affects their daily life. Almost 70% of them live below the poverty line. Last year, only 31% of working-age people with disabilities participated in the national workforce, compared to 80% of non-disabled people in the same age group.
It’s NOT just me. I’m NOT insecure, paranoid, overreacting or any of that other stuff people wish we would believe when the truth is too uncomfortable.
It’s hard to hold the public’s attention to this problem because, like the needs of so many disenfranchised people, it doesn’t apply to everyone. But it IS your problem; you just don’t know it yet. Your skin color, ethnicity or sexual orientation won’t change. Your religion won’t likely change. Unfortunately, the disabled community is one anybody can enter at any time.
The A.D.A is an amazing gift in overcoming society’s physical barriers, but no law can realistically order people to open their minds. It turns out our greatest obstacle is not a flight of stairs. It’s public perception.

 

Knowing is WAAAAY more than half the battle.

The tiniest shifts in our thinking could bring about big change. For example, the phrase “wheelchair bound” makes the chair seem like a ball and chain when it’s really a liberator. When I couldn’t walk at all, I was never more bound than when I was out of my chair because without it I couldn’t move around independently. Even though I can walk now, I still need my chair to do things like go to the grocery store. Think of it as a valuable tool rather than an unfortunate weight. I couldn’t function without it. It gives me independence and a larger degree of autonomy. Does that sound “bound” to you?

“The only disability is a bad attitude”.

I imagine if you’re reading this, we’ve probably had some version of this discussion more than once. To my infinite frustration, I can’t even leave the house without experiencing the consequences of too many people just not getting it.

The difference between attitude and disability is CHOICE. No amount of mental adjustment is going smooth out my gait. Positivity will not make my muscles jive better with my brain. I can’t think myself more flexible. I can’t get enough work-life balance, balanced checkbook or well-balanced diet to improve my actual balance.

Unlike disability, attitude doesn’t bar access or limit your ability take the stairs, ride the bus, get a job, live independently or generally have the options available to typical people. Some of the most successful people I know CHOOSE to have the worst attitudes.

I’ve learned to develop a thick skin in the interest of open conversation, but I won’t let that slide. Here’s why it’s offensive:
You would never say to your Black friends “I just don’t think of you as Black,” or tell your guy friends you don’t see them as men. I totally dig the idea of the only race being the human race, but we all know it’s baloney. Despite our ideals, our differences DO matter in real life. What you’re really telling me is you don’t want to put a label on me that you perceive to be negative. If you can’t call me disabled because you think I’m smart, resourceful, independent and capable, then you need to make your definition of disability match that because it’s what I am.
There are countless others like me, and we suffer very real consequences of your misconceptions. The short list includes economic and social exclusion, segregation and abuse.
You don’t think your contributing to the problem? Every time you avoid contact with a disabled person, block a ramp or park in a blue zone “just for a second”; the children watching you are learning how to respond to people like me.

 

I’m much happier now that I know what makes me miserable.

 

Everything good in my life is a result of infinite grace and the kind of wisdom you can only get from screwing stuff up the first time.

If my first marriage hadn’t sucked, this one wouldn’t be so awesome. The trick is to learn, not only what went wrong, but why. We make a big deal out of trying to figure out what we want in life. We start out early asking kids what they want to be when they grow up and lay it on really thick around high school with all the “What are going to do after graduation? Where are you going to college? What are you going to major in?”. Most of the time, these early plans don’t pan out for two reasons:

1. You didn’t have enough experience to understand everything the plan entailed.

2. You didn’t give equal consideration to what you don’t want.

Number one is obvious. I want to talk about number two.

Having an idea of what you want is super, if you’re flexible. You may get it and see it’s totally different than you expected.  You may discover a million really great things you didn’t even know you wanted along the way. What you want is usually a very fluid concept you tweak a little as you go along.

What you don’t want is probably not going to change much. I went into my last job knowing exactly what I wanted: A steady full-time job that offered benefits (in spite of all my pre-existing conditions, thanks Obama) so I could finally emancipate myself from Social Security Disability. I grew up thinking I could get a job, really dig in, learn everything and work there for the rest of my life. I thought there would be room for advancement, and I would be compensated according to my value as an employee. I knew I was valuable. I believed these things so deeply that finding out they weren’t true shook me to my core…something akin to definitive proof that there is no God.

I had to suck it up and regroup, searching out all the happy accidents  and bits of wisdom  I’d gathered in my time there, not the least of which was a sturdy list of things I’d learned I couldn’t live with in my next employment like blatant, raging sexism and condescension, or a boss who sometimes seemed to bully his staff out of sheer boredom.  I have a lot more confidence going into this job search (and every aspect of my life, really) knowing I can make a more informed decision about the situation in which I spend most of my waking hours.

The moral of this story is: don’t stress about figuring out exactly what you want.  Be realistic about the things you just can’t put up with. We’re often told we can’t change other people, and that’s super true, but there’s also only so much we can change about ourselves. That’s not an excuse for bad behavior. As in “I’m a jerk. It’s just who I am, and I can’t change”. I was thinking more like “I used to think I would be ok with a boyfriend who bites his toenails (or is a different religion than me, or has different social convictions than me, etc.) but now I know I can’t”.

I’ve know what makes me happy, pretty much since birth, but it was leaning what makes me miserable that actually brought me happiness.

Let’s just get this out of the way.

 

I always wanted to be a writer. As luck would have it, my life has turned out to be one lesson after another, and someone really should write this stuff down. So many things have stopped me. Isn’t it kind of narcissistic to write about yourself? Many biographies and autobiographies become best-sellers, but they’re almost always about celebrities whose lives have already proven marketable. I’m afraid of being perceived as self-indulgent, trying to elevate my experiences as thought I think everything that’s ever happened to me is a big deal. I know a lot of people…many, many people…loads of them…have had much more meaningful and profound experiences than mine. Others have even had tragic experiences and handled them with infinitely more grace than I could ever muster, coming out stronger, triumphant and doing all kinds of good in the world. They’re more interesting than me, and probably even better people.

Above all, because so many of my experiences are colored by disability, I’m afraid you will:

• Immediately dismiss them because they don’t pertain to you (yet… God forbid!)

• Decide I think the world should cater to my every whim because I deserve it.

• Think I’m indulging self-pity.

• Apply the “angry cripple” stereotype to me, and refuse to give audience to what you perceive to be the chip on my shoulder.

• Make me into a pitiful (gulp) poster child.

• Get a slight case of the warm-fuzzy inspirationals, then not take any sort of action.

Furthermore, because my faith strongly influences many of the things I’ll write about, I fear you will:

• Apply your opinion of general Christianity to me

• Discount the way I demonstrate my spirituality because it doesn’t look like yours.

I bet this looks like I’m desperate for you to like me. I hope you do, but that’s not the case. It’s really that:

• I want you to give me a chance.

• I’m afraid of being the reason you to dismiss or minimize any social issue I write about, because it’s intensely important to me or I wouldn’t have risked it.

• I never want to hurt anyone’s feelings. If you get mad…well, that’s up to you, but I don’t want to hurt your feelings.

You probably think I’m insecure, but isn’t it the opposite of that to commit this kind of stuff to print? I’m just keeping it real. Now that I’ve addressed all my neuroses, I’m going to proceed to empty my head. If it resonates with you in any way, let it stick.