Monthly Archives: April 2017

Doing Your Job Does Not Make You a Hero

Hello readers,

Here at The Nest, we’ve talked a lot about how people with disabilities are not inspirational just because they do ordinary things (as Stella Young said, getting out of bed in the morning and remembering their own names). Fairly recently, we also talked about how the disability movement needs to stop martyring parents and caregivers. We need to stop focusing on how stressful and painful it is to be involved in a PWD’s life–because oftentimes, it isn’t. We need to stop martyring parents and caregivers for doing their jobs.

But there’s also something else we need to stop doing to parents and caregivers. They aren’t martyrs, but neither are they heroes. Yet, the traditional way of looking at disability says different. I bet you guys have seen social media posts, Pinterest pins, and general axioms that say stuff like this:

  • Special needs parents move mountains.
  • I’m an autism mom/dad. What’s your superpower?
  • ____ DISABILITY MOM (written across a superhero crest, a la Superman)
  • Brilliant, brave, determined, badass ninja: Because “special needs parent” is not a job title.
  • Special needs _____ (parents/teachers/caregivers) are heroes/my heroes

Come on. Can we cut the bull? Because that’s what this is. It’s bull. Yeah, I know; statements like these are meant to make people feel good. I get it. The question is, who feels good when they hear or see these statements? Who do they benefit–and who do they not?

You got it: the parents, caregivers, and teachers feel good. They feel wonderful, and why shouldn’t they? They’re being called heroes. They are being compared to freaking SUPERMAN (or whichever your favorite hero is). But why? You got it again: because they are doing their jobs.

I’m gonna keep this short and blunt. Parents, caregivers, teachers, aides, therapists–whatever your job title is, you do not deserve a medal, a cash bonus, or a cookie for doing it. You do not get extra credit because the person you love, care for, or work with has a disability. You do not get to paint yourself as a saint for loving that person, and the rest of the world shouldn’t, either. You are not a saint. You are not Superman or Wonder Woman. You are not a tower of strength and patience. You are a regular person doing a job.

“Hey, Chick,” you might tell me, “you’re being awfully hard on these parents and caregivers. Their jobs are hard. When was the last time you saw a parent put a diaper on a fifteen-year-old with no bladder and bowel control? Have you spent more than a minute in a special ed classroom? Where do you get off?”

Okay, I’ll answer that, because it’s a fair question. I’m not discounting that a parent, caregiver, or aide’s job is difficult at times. I’m not disputing the fact that therapists, special education teachers, whoever, have to go through more than their “general” counterparts. I’m not saying these people shouldn’t be praised. What I am saying is that to constantly praise these people for doing what millions of other parents, caregivers, and teachers do every day, is based on a lie. It sets us back in terms of disability rights and seeing PWDs as equal people.

I have read testimonials and articles that speak to this. In these testimonials, parents describe their children expressing, verbally, through writing, or otherwise, that they are confused. They wonder, why is Mom or Dad a hero for loving me? They ask themselves, why is Miss Susie from preschool or Mr. Andrews in my science class a hero for giving me an education? Adults with disabilities are asking, why is my boss considered heroic for hiring me? Am I not lovable enough, smart enough, worthy of a job, or worthy of an education?

Our mouths say yes, these people are worthy–but our actions say no. Parents seek respite care for their kids and teens, whether or not it’s appropriate, because of the “constant stress” of dealing with disability. Teachers and employers complain about the time and effort it takes to educate and hire PWDs–and that’s if those things even happen. Too many times, teachers, employers, and specialists fall back on the segregated model of disability, so that dealing with disability is easier for them. And then, consciously or not, they accept the role of saintly hero for doing it.

Guys, what are we doing? Really, honestly. WHAT are we doing?

I’ll tell you what we’re doing. We’re using the hero concept, the inspiration concept, the ____ (fill in the faulty disability construct) concept as a way to objectify PWDs for our benefit. Of course, we’d never say that and consciously we’d never do it. At least, most of us wouldn’t (and those who would need to be slapped). But that’s where we are. Anything that paints a temporarily able-bodied person who is involved in the life of a PWD in any way, as a hero, is a form of inspiration porn. It is thought pornography. It is emotional pornography. Stella Young called it “porn” because of its objectifying nature, and she nailed it.

I’ve said it before and I’ll say it again: if we don’t use a certain construct for people without disabilities, why are we using them for people with them? Teachers, would you want to be considered heroic for educating TAB children? Parents, do you want to hear, “God bless you/you’re a hero/I couldn’t do what you do” just for raising and loving a typical child? So what is going on when we do it to PWDs?

Sometimes, the actions of parents, caregivers, and other people in the lives of persons with disabilities are heroic. Most of the time though, they’re great, but ordinary. Let’s remember that and put away the capes.

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What if We Were All Cured or, Why Create Disabilities?

Hi readers,

I hope everyone had a happy and blessed Easter or Passover, and that if you haven’t had spring break yet or are in the midst of it, that’s going well, too. Since we did just have these holidays, this is going to be one of my posts that is a little more God-centered than normal. It centers on the age old question, if God can cure disabilities, why doesn’t He? More to the point, why does He allow disability, and is it for the reasons we think?

God has proven, over and over, that He can cure disabilities, and that disabilities don’t have to exist. Read the New Testament; there are several accounts in each of four Gospels of PWDs who were completely healed. So naturally many people, especially today’s Christians, ask why God doesn’t seem to do that anymore. Christians, Jews, Muslims–people of all faiths–pray that somehow, the people with disabilities among them would be “made whole.” They entreat their gods for intervention–but one specific kind of intervention. The type that cures, that ostensibly heals. And often God, or Allah, or Krishna, or whoever, says “no.”

Why? Of course, we think we know. We as humans have dreamed up several explanations. We say things like,

“God allowed my child to have a disability because my special child needed a special parent.”

“My child’s disability shows the world who God is, because my child is so compassionate/happy/selfless. She never complains. He always has a smile for somebody.”

“My child was sent to bless others/is God’s special angel.”

“Disabilities exist because there is evil and suffering in the world.”

Now, are those statements true? I don’t know. I don’t know the mind of God. What I do know is, those statements reek of ableism, no matter how well-intentioned they are. That last one in particular gets to me, because while it might be theologically accurate, it implies an individual with a disability is a personification of suffering. I mean, who came up with that? What kind of God would create someone and say, “I really don’t want to do this to you, but I have to because the world sucks?” Again, I don’t know, but I don’t think that’s how God works. God is not an ableist. Nor is He limited in power; He doesn’t have to create PWDs. Due to free will, He allows evil and suffering, but that allowance is acquiescent, not permissive. He doesn’t create PWDs just because the world sucks. So there have to be other reasons, right? Right.

I don’t know what those reasons are, and I’m not going to try to explain them. What–or Who–I do know is the person behind those reasons. For me that happens to be God the Father, God the Son (Jesus Christ) and God the Holy Spirit. So bear with me; if you have a different god, that’s fine, and I hope you’ll find some encouragement based on what I’m about to say even if it doesn’t reflect your belief system.

See, humans have gotten this whole earthly living thing mixed up, and I’m as guilty as anyone. We think because we are here, because we are the highest life form and at the top of the food chain, earthly living is about us. It’s about what we do to survive and thrive. As Solomon said, “Eat, drink, and be merry,” for tomorrow, we die. And I guess if you’re an atheist or agnostic, that works for you. Fine; live as you wish. But for those of us who claim a god, particularly the Judeo-Christian God, life is not about us. It’s about God.

That’s right. We’re here because God wanted us here, not because He had to create us. We’re here because He chose for us–every one of us–to be here in certain times and places, and that includes PWDs. Sometimes I really must struggle to remind myself of this, because I feel like a big mistake. As if God was going along fine and then some clumsy angel flipped a switch and whoopsie! I got CP. I even asked my parents one time, “Okay, so the only reason I have CP is because my heartbeat stopped during birth and the doctor had to get me out right that second. I wasn’t created like that. It wasn’t supposed to happen.”

My parents didn’t have an answer for me, and I still don’t have an answer myself. People have told me CP was God’s will, but I don’t know what He was thinking on January 7, 1986. I know He could see all, knew all, and knew I’d have CP. And I know because of that He didn’t say, “Crap, I blew it!” But would CP have happened if my heart kept beating? Would your child have Down Syndrome if you’d had him at 30, not 40? Would your child be blind if you had pushed her from the womb 15 seconds sooner? Who knows? And really–should we care? Maybe not.

Why not? Because if we, and if the universe, is all about God, He gets to say why PWDs are here. And maybe, like everything else, it’s for one big reason: so the universe and its people will know who God is.

Now, I don’t mean that in the hokey way Christians dress it up in (and other faiths too, I’m sure). I don’t care how happy and compassionate a PWD is, he or she cannot function as a 24-7 representative of God, or the universe, or whatever. But maybe, in looking at disability among all the other differences out there, among all people, we could understand God a little better. Maybe we would see a God who creates everyone with utmost care and purpose. Maybe we would finally see that disability is diversity, diversity is disability, and God says both are good. Maybe we would stop pitying and discriminating against God’s people and instead say, “That’s my brother. That’s my sister. I love them.”

People with disabilities, like TAB people, have opportunities every day to show who God is. Maybe one person does it as a missionary. Maybe one does it as a doctor, or a teacher, or a blogger, or a Wal-Mart greeter. They don’t do it just by breathing, the miracle of creation notwithstanding. They do it through life–real life, not the artificial life given to them by people who take control because their bodies work “normally.”

I don’t know why every single person, disability or no disability, is here. What I do know is, we all need the chance to say, “This is who I am, and I’m here because I was created this way. Isn’t that cool? Isn’t my God cool?”

Don’t waste your chance. Use it. You might change the whole world.

The 80-20 Rule or, When to Play the Disability Card

Happy April, readers! It’s Throwback Thursday, so to set up this post, I want to share with you a memory from one of my favorite times in my life.

It’s May of 2007, and I’m in London. My college got a grant to take one English major and one history major on a ten-day trip to London and Paris, with the theme of A Tale of Two Cities, and I was the lucky English major. On this particular morning, the history major, our mutual professor Dr. M., and I are watching the Changing of the Guard at Buckingham Palace.

Dr. M. has been a lovely chaperone thus far, making sure things are accessible and safe, and that I have what I need so I can enjoy the trip. In doing so, I can tell she’s built up some questions about my disability, but until today she doesn’t ask. Today she says,

“I’ve noticed you’re really determined to do everything everyone else is doing, and you only ask for help when you really need it, or when I kind of push you.” (True; for example, we brought a wheelchair along in case the extensive walking around London and Paris got to be too much). “How do you decide when to ask for help, or bring up your disability as a reason to do something differently, or not do something?”

And I thought, that’s a really good question. Writing this blog now, I still think so, because as we’ve discussed, people with disabilities often struggle with when to ask for help. I know I do, all the time, because I really would rather never do so. At least, not where my disability is concerned. I’m perfectly okay with saying, “Hey, my hands are full. Can you grab the door?” In school I was okay with saying, “Mr./Mrs. So-and-So, I’m not sure I understand what you just said about buildingsroman novels/why is the answer to this math problem 5.58 when I got 3.76?” But bring my disability into it, and I kind of–no, not kind of. I do feel like a doofus. As a high school junior, I once had to ask a teacher to tie my shoes. Can we say “humbling moment?”

It has taken me a long time to be comfortable asking for help in those situations, and I sometimes still fight it. People with disabilities are simultaneously taught that they need to be independent, yet need help with everything. (Yet another instance of double-talk, although it’s not always intentional). Speaking from experience, that dichotomy can cause a lot of discomfort when you legitimately need help or can’t do something. But it also allows you to think carefully about what you can do. When should you challenge yourself? When should you work, move, or participate independently? When is your disability a legitimate reason to do or not do something? When do you, or don’t you, “play that card?”

As with a lot of things, the answer is different for everybody. If you have severe disabilities, those will probably influence a lot of what you can do, and that’s fine. Yet every situation is different. If your severe disability impacts your ability to speak, it’s absolutely fine to say, “I need X agency to spend money on a speaking device.” But if your severe disability does not impact how you feed yourself, it’s not okay to take someone else’s time and ask to be fed, just because you want the service.

With milder disabilities like mine, it’s a bit trickier. If your disability is mild or invisible, you may have been taught it’s never okay to “play the card.” That’s wrong, because there are situations in which it is okay. I told Dr. M. that my personal rule is 80-20. As in, 80% of the time, I do my best to act independently, to do the things TAB people are doing, and to blend in. And usually, that works. But the other 20%, I do have to say, “I have CP and it’s going to affect this situation.” Example: Later on in our trip, we toured a historic European castle. The problem was, the castle was highly physically dangerous–stairs with no railings, slick surfaces, dark passages, etc. By that time, I had also pulled a knee muscle walking. So on the advice of Dr. M and my classmates, and for my own safety, I said, “That’s fine. You guys go; I’ll grab a bench and chill.” Did I miss touring the castle? Sure, a little bit, but I wanted to be safe. And sometimes that’s the way it is with disabilities. You choose the option that’s safest or best for you in the moment. The people around you should understand that, and if they don’t, that’s their issue, not yours.

The rule is not always 80-20. Sometimes it’s 50-50. For instance, if I go to a picnic or festival, I might be able to participate in half the games or races. And sometimes there’s not a ratio at all. But, are there instances where it is always okay to use the disability card? Yes. Some are, but are not limited to:

1. Life-threatening emergencies. For instance, if you are a PWD caught in a natural disaster, it is okay to ask for medical and other services to see to your needs first. That’s not abusing services; that’s saving your own life.

2. Non-life-threatening, but unsafe situations. See the castle example. And, I learned the hard way, if the bus has priority seating for PWDs, take it. Do not try to stand just because the bus is already crowded and you feel awkward asking somebody to give up their seat. You’ll end up in the aisle the minute the bus moves.

3. Situations in which you could do what is being asked, but are legitimately unsure you could do so successfully. For instance, when my brother and SIL were dating, they came over to play cornhole. I’d never played and gave it a shot, but found out I wasn’t good at it. So I chose to sit out because I’d rather do that than play unsuccessfully. Another example: Let’s say you have a learning disability, and your friends want to play a word or numbers game. That’s your choice–you can participate with them, or you can nicely say, “How about we do something else?” As long as you are not insisting on having your own way, or accusing people of leaving you out when that’s not their intention, you’re fine.

4. Situations in which the other person doesn’t know about your disability. This happened all the time, especially in college. Remember, there are no IEPs at the university level. Therefore, my professors didn’t always know I couldn’t write, unless they had me before. (Even then, I had some profs say, “I’m sorry; I totally forgot.”) In those cases I had to basically say, “CP, remember? But that’s okay; I’ll get someone to take dictation.”

5. Situations of blatant discrimination. Self-explanatory. Never be afraid to blow the whistle on a person or people treating you badly for a disability.

Situations in which “playing the disability card” is not okay:

1. You’re literally playing a card. As in, bringing up your disability exclusively for sympathy or to manipulate a person or situation. Not cool.

2. Situations in which you legit need services, but are abusing them. This is the kid in a wheelchair who can participate in P.E. with modifications, but flat out refuses, or accuses the teacher/coach of “making” him do what he can’t/being unreasonable. It’s the blind employee who freaks out when a colleague, with no malicious intent, says “See you later.” It’s the college student who needs extra breaks during tests, but uses them to “go to the bathroom” and stuff cheat sheets down his pants. (This last one is true. My first college job was as an assistant to the school’s Disabilities Office director. One of her colleagues at another university had that happen to him).

3. Your disability should not/does not affect the skills you need to complete a task. For instance, I have auditioned for plays before and requested a chair, since nerves sometimes affect my balance. That’s fine. What would not be fine is claiming that, because of my specific case of CP, I need a script in large print. I don’t, and if I asked for one, it might take that resource from someone who did.

4. You overplay the card. This is what would happen if, say, I went jogging with friends and not only asked them to stay off rocky trails (legit) but constantly asked them to slow down/asked them to hold my arm the whole way/asked for a break every 10 seconds (not legit).

It can be hard to determine when you really need help and when you’re fine, when your disability should and should not affect certain situations. Sometimes your disability will influence situations unexpectedly–another legitimate reason to bring it up. But remember that as long as you are congenial, and as long as you are addressing actual needs, your disability is always legitimate. No one has the right to deny you help you truly need, or to tell you you’re making stuff up when you’re not. That disability card could be the ace up your sleeve. Be careful when you use it, but never be ashamed of the fact you have it.