Category: Disability

Do you know your neighbors?

Mr. Rogers had a life-altering impact on me.

I’m a 38-year-old woman with cerebral palsy. I’m not necessarily what most people associate with CP. I can walk and participated in mainstream public schooling as a child, but having a disability definitely played a formative role in shaping my life and the person I am.

My family made sure I had the best health care they could find, but never talked to me, or asked me about being disabled. I obviously knew I was different from my peers, but I only knew I had CP from listening to doctors speak with my mother.

I was (and still am) a huge fan of PBS, and watched Mister Rogers every day. I was probably 5 or 6 when I saw Jeff Erlanger on the show, and vividly remember thinking “ok, I’m not exactly like this kid, but this is what I am”.

I’m so thankful to Mister Rogers for confirming something so fundamental about myself and that there was nothing wrong with being like Jeff and I. I adamantly believe that my life could have taken a much darker turn without that experience. I still take a second to thank Mister R. every time I advocate, educate, speak or write about disability issues, and every time I remember to stop and realize how lucky I am to be living as a whole, happy and complete person with the right to acknowledge disability as a part of what makes me who I am.

It’s like peeling a snail from its shell.

Unless you’ve been under the same rock some of our lawmakers undoubtedly crawled out from under, you can’t help but have a strong opinion on the state of the healthcare system. I’ve got a lot to say about it myself, but for now I want you to see this video. It’s not an easy watch, but it is important

It’s not unusual for the police to restrain protestors, but what’s the equivalent of handcuffing or shackling a wheelchair user? I suppose I removing them from their chair gets results, but it’s NOT the same. It’s not restraint, it’s dismemberment. It’s excessive force, and a gross abuse of power to further reduce our weakest citizens, especially when they’re exercising their constitutional right to peaceably assemble. I thought the GOP was all about the Constitution! Denying the poor and disabled access to healthcare is just slow genocide.

“Reactionary” is not an insult!

I’ll be the first to admit I have a lot of “buttons”, triggers that set me off, and apparently society has a lot of fingers with which to push them.

Recently, I was involved in a conversation with someone was obviously trying to bait me into saying how inspirational a certain wheelchair user is. Feeling a bit of pressure, I proceeded to explain all the ways the person is inspiring that have NOTHING to do with physical ability or the lack of. That exchange is still gnawing at me. I’ve been reminding myself how the misuse of people with disabilities as the warm, fuzzy, puff pieces of society is a particularly sensitive button of mine, the person I was talking with probably doesn’t have the life context to understand that, and I have to take responsibility for my own “issues”.

I’ve often been called reactionary and sensitive. I’ve taken a lifetime of mostly good-natured teasing about it and been routinely dismissed because that’s just “how I am.” In the middle of making excuses for myself, I realized if “how I am” is “sensitive” to the fact that people in this country are being marginalized to the point of near invisibility, being “accommodated” as though it’s a special favor and not a legal right, and summarily subtracted from public life as though their tax dollars don’t fund it, then I’m proud of that. The same goes for sexism, racism and every other kind of discrimination humans inflict on each other.

Trying to make someone feel bad for reacting to their own mistreatment (or the mistreatment of others) is a proven, documented tactic of abusers and bullies. It’s wrong, and it’s REAL. Anyone who tells you otherwise is benefitting from the status quo. They might be perfectly good people who are so blinded by their own privilege, they sincerely don’t see it. Have a chat with those folks about empathy, but don’t accept the excuse. Even the most innocent misconceptions contribute to the problem. It’s unacceptable, it’s dangerous, and it’s systemic. Call it out!

I’m not sick!

I had a fairly deep conversation with myself this morning, over a steaming sink of dirty dishes. I realized myself was making a pretty decent point, so I decided to let you in on the chat.
I grew up in a church that subscribes to practice of the laying on of hands in prayer for divine healing. For more than 20 years of my life, I attended youth camps and prayer meetings. I was in church every time the doors were opened, and sometimes I just used my key.
Countless times while in those services, I’d make my way to the altar by way of cane, walker, wheelchair or under my own power to seek prayer for a range of ailments and trials.
More often than not, I’d immediately be surrounded by my fellow believers who were praying, not for the encouragement or guidance I was seeking, but strictly for God to deliver me from my wheelchair.
Just to be clear, Friends, this talk doesn’t really have anything to do with religion, and I’ve got no grudge of any kind. It’s about the prevailing idea that all people with imperfect bodies want to be normal, that we’re anomalies in the spectrum of humanity that have to be dealt with some how.
If typical people didn’t perpetuate that ideology, we would have more ramps and fewer stairs. Ramps work for everyone. Stairs don’t. If there were fewer accessibility barriers, there would be less unemployment among disabled people. I could go on and on…
When people assumed I was seeking healing because I have a visible disability, it feels like A) that attribute of myself is totally unacceptable, and B) they’re disrespecting the way God made me, not even considering it might be for a purpose.
Don’t get me wrong, for the most part, they’re good people doing what they sincerely believe God wants them to do, but why didn’t occur to anyone that God made me exactly the way he meant for me to be? My whole life I’ve heard talk about how we are “fearfully and wonderfully made”, but then we pray for the deliverance of people who were somehow made incorrectly?
People will line up all day long to tell you your plight was God’s will, unless it’s something that makes them uncomfortable, then you need to be delivered from it. Who gets to decide where that line is?

Are you an ableist?

Recently, someone questioned my use of the word “ableism” to describe society’s tendency to favor typical people over those with disabilities. It’s a real thing, y’all. For example, everyone can use a ramp (including people with handcarts, strollers, etc) but only the able-bodied can use stairs. In spite of this obvious fact, stairs are the rule rather than the exception, often limiting where people with disabilities can work, live, eat, shop, worship, go to school, socialize and pretty much everything everyone else does..

Inevitably, when I start talking about this sort of thing, someone will feel compelled to tell me a story about how their brother’s girlfriend’s neighbor knew a guy (not a guy, a kid. It’s always a kid), who overcame his disability and learned to drag himself up the stairs, and he’s SUCH an inspiration.

The only thing a story like that should inspire you to do is demand more practical accessibility standards so no one has to resort to becoming a spectacle.

We appreciate your support, but I’ll take dignity and independence over fleeting, warm fuzzy admiration any day.

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Acceptance & Independence

* I’m not sure of the exact date, but I remember the moment. The following post is a throwback, written within my first couple years of living in California. It was a bittersweet time filled with life-changing revelations.

This is one of the happiest:
I was just thinking of all the friends over the years, people who have been close to me, and learned to anticipate my clumsiness.  You automatically extended your hands when we approached a curb. You learned NOT to open doors for me, because I use them to catch my balance. You naturally and graciously filled in the gaps, indulging my need to feel I was maneuvering smoothly and inconspicuously through the world. I LOVE LOVE LOVE you for it. I have yet to develop that kind of intuitiveness in my California friends, though they’re always willing to lend a hand.  When I first left Texas, I panicked, realizing for the first time that I had humored myself with a false sense of independence, when it was really all of you who had adapted to me. I was forced to learn new navigating tricks, and how to accept when it doesn’t go to plan. It’s no revelation, but I’ve really had to re-accept that,just because I cant always do things the way everyone else does, doesn’t mean I can’t do it. Having to fill my own gaps has caused me to FALL IN LOVE with my ability to create my own way and always see the humor. I just splashed a coffee trail across the office.  There was a time I would have been mortified, but I cleaned up after myself with a giggle,  and most importantly without embarrassment, or  feeling  compelled to explain myself.  That’s just how I roll, and there’s nothing wrong with it. Today I’m thankful for independence and self acceptance.

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 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.