During the month of February, Aiming Low Does Good is taking a closer look at physical disabilities and the people who live with them. Our goal in telling their stories is to encourage you to do what you can, when you can, to make everyday life more accessible to everyone.
Today’s post is written by Tanis of The Redneck Mommy, the mother of a little boy who spends a good chunk of his life in a wheelchair.
I have coveted a lot of weird things in my life, like a brooch made entirely from a dead parakeet’s head, or shoes lined with fur and which slightly resemble Satan’s hooves. But the one thing I find myself coveting the most these days is likely the weirdest.
I want a minivan.
Not just any minivan. I want a pimped out minivan (preferably one with bold yellow flames painted on the sides) equipped with a wheelchair lift. And maybe a banging stereo system. Because if I’m going to suddenly trade in my ‘cool’ card for the stereotypical minivan-driving mom card, complete with a handicap placard hanging from my rearview mirror, I at least want to be able to tune out my sorrows by belting out Billy Ray Cyrus’s song, “I want my Mullet Back”.
My husband thinks my tastes are questionable. I prefer to think my taste is eclectic.
Life as I knew it changed when we adopted our son Jumby. Amongst other diagnoses, Jumbster is a quadriplegic. Which means I spend a lot of time pushing a wheelchair. This comes in handy given the fact I’m prone to spilling things all over my lap when I eat. I never have to worry about the stain on my pants because the wheelchair I’m standing behind obscures it.
There is a bright side to everything.
But having a child who is unable to use any of his limbs, cannot stand or dress himself, toilet himself or get himself from point A to B without either being pushed in a wheelchair or carried about by a willing adult has its limits.
My back has found those limits. I am simply not cut out to hoist a wheelchair that weighs almost as much as me and doesn’t fold in half, in and out of a vehicle. Heck, I’m not cut out for packing a 40 lb Jumbster around. My arms, they are about as strong as an overcooked piece of spaghetti.
If it’s not bad enough to have to deal with the physical difficulties of life with a child in a wheelchair, I get to deal with the insult of it as well. Like walking along, pushing my son, only to have the wheel of his chair fall right off.
Or loading up my son to take him to a restaurant to celebrate a family member’s birthday only to pull his chair out of the back of my SUV and find all the screws holding the chair have wiggled loose and fallen out, rendering the chair useless. And then dropping the one damn screw I need to hold the entire thing back together down a sewer drain.
And more often than not, I’m that mom who takes the chair out of the vehicle, forgets to put its brakes on, turns her back for one second to discover it rolling its way to freedom and then having to chase after it like a lunatic so I can put Jumby in it.
Jumby’s wheelchair hates me. I swear I’ve heard it hiss at me when I’m alone in a room with it.
But having a child in a wheelchair doesn’t just mean heavy lifting, pushing and praying its wheels stays on when we go out in public.
Life with a child in a wheelchair means encountering doors that don’t automatically open and as long as my monkey arms are, I still haven’t found a way to gracefully hold open a door and push him through it simultaneously.
It means watching people walk through the same doors you are trying to get through with no offers to help.
It means not being able to take my child for walks on trails or places with uneven pavement. It means not being able to shop in stores where the aisles aren’t wide enough and being told upon complaining about this that the next time I shop I should just leave my son at home.
Life with a kid in a wheelchair means not being able to go grocery shopping without an extra person because I can’t put Jumby in a shopping cart even though he is still little. He can’t sit upright in a buggy. He would flop over, obstruct his airway or worse, fall out.
It means getting sneered at when I take him to a theatre and find people sitting in the chairs next to the only wheelchair space available and refusing to move because they got there first.
My son is never going to be able to walk. He’s never going to be able to sit independently. His chair is a part of who he is and it’s a part of my daily life, cluttering up my house and leaving skid marks on the linoleum.
I hate his damn chair and the fact he’ll never be out of it.
But mostly, I hate the fact the world doesn’t see my son while he sits in it. How invisible it makes him to the world when to me, my son is the brightest star there is.
A pimped out minivan with yellow flames and a wheelchair lift won’t change any of this. The world won’t be any easier to navigate as I push my son in his chair. People won’t automatically become more considerate or more compassionate. My son won’t be any less disabled. But, I figure, it couldn’t hurt either.
At the very least, having a vehicle with a lift may mean I won’t be spending my forties hunched over, looking like a monkey humping a football. I’d say that’s a great reason to covet a minivan.
Oh, and if you ever see an empty runaway wheelchair with a frazzled woman chasing behind it, try not to point and laugh. It could be me.
About Aiming Low Does Good
If I ever win the lottery (I’m going to start playing now because of Jumby), item one to purchase on my list is going to be this eclectic minivan you envision. Number two is an awesome wheelchair to match.
How can this world be so cruel? I’m ashamed for all the people who look the other way when you need a door held for you.
This post is eye opening and I love that you have a sense of humor and rise above it all. xoxox
Twitter Name: lotsospermies
I’m sure it’s been suggested, but if all of Tanis’ adoring fans each gave $1, surely we’d have enough to buy an electric wheelchair and flame covered van, right? The thought of a flame covered van driven by the Redneck Mommy is awesome!
Twitter Name: sillynothings
You can put ME on the list of donors….. :)
You could definately put me down! Great idea and someone who knows what theyre doing (which i dont) should get the ball rolling on this one.
Count me in for a donation!
Really?! What is the matter with people? I hold doors open for able-bodied people, people pushing strollers (even if they have dogs in them) and those in wheelchairs. And the movie thing? Infuriating.
I’m sorry you guys have to deal with people’s stupidity, selfishness and general ickiness. You all deserve better.
Twitter Name: msmegan
I second that!
The invisibility kills me, just kills me. And to be told to come back to the store WITHOUT your son? That says everything right there. Grrr.
Your car is surrounded by powerhouse neon kickin’ flames, I promise, even if you can’t see them, they sure as hell are there.
Twitter Name: debontherocks
Spot on as always, Tanis. People need to open their eyes more and be less ignorant. Thank you for sharing.
PS…if anyone does start a fund for your HOT vision of a minivan, you can def count me in. You may even start a trend for other parents who want the same model. :-)
Twitter Name: gracoKaren
I’m sure Redneck Mommy’s post wasn’t a call for donations, BUT… I love this idea! Lift vans are outrageously expensive, so not something that an average family can typically afford. So… I’m in for more than a buck!
Twitter Name: bonesysblahg
HUGE Redneck Mommy fan here (and fellow Albertan). Do they make wheelchairs in 4 x 4? Because I’m guessing that would help too. And maybe a lift kit?? And something that has a special button, that when you push it, an electric arm sticks up in the air and gives people the bird as you walk away from their ignorance. I think Jumby would love that. i’m sure you would NEVER run out of reasons to push that button.
As always, I’m amazed by what you do. I’d love to donate to a electric wheelchair fund!!!
Twitter Name: lucynamackay
Ack! You are all so awesome. But under no circumstances was this post a cry for money or donations of any kind. Thank you everyone, but NOOOO! My husband would kill me. And then likely spend all the donated money on Cheetos and porn after he buried my body in a field somewhere, so keep your dollar bills. You thoughtful people you.
Twitter Name: Tanis Miller
See, every tricked out minivan should have a flip-down tv screen and then he could watch the porn and eat cheetos while you drive.
Aw, I would sooooo arrange to get you that very van – if I had the means!
[It's the thought that counts, right?]
Twitter Name: ClassiclyAmber
What they said.
Well said!
Love love love the way you expressed all of our frustrations here! My 14yo daughter is in a wheelchair, too. I also hate it when people cut in front of her in line..just because she is sitting down doesn’t mean she isn’t “standing” in line!!!
Twitter Name: HannahAntics
I call security/the cops on people who take up spots set aside for the disabled. And I don’t even blink doing it. And if they’re still there when I’m doing it I make sure to let them know exactly why. I went to school with a number of people with disabilities including quadriplegics and people with CP, MD, etc. and they deal with enough without some entitled idiot getting in the way.
Twitter Name: baltimoregal
Also for further wheelchair/other accessibility dreaming, check out Dean Kamen’s work. It’s pretty amazing. http://www.dekaresearch.com/ibot.shtml
Twitter Name: baltimoregal
My husband has MS and is in a,motorized chair. He also seems invisible to most. People walk in front of him all the time. They don’t hold doors or act decent for the most part. Sad really.
Even though I have known you a long time online, you usually write about the struggles of your kids, and don’t complain about your role. As a mother who loves your kids, you are happy to do everything you can for them.
I don’t really know that much about wheelchairs, but I am assuming there are all sorts of sizes and shapes. Does your son need a particular type of wheelchair? Is there a wheelchair that might be lighter and easier for you to manage, but still be perfect for him? Can you request a certain type of chair through medical coverage? Canada is not going to get you a mini-van, but are there ways to make the daily use of a wheelchair easier for both of you?
Twitter Name: neilochka
Good point Neil. As a fellow Canadian (BC) the people I have worked for who have physical disabilities and need a chair usually have them covered by medical insurance or disability. (Or is this as they are adults? Hmm..) Sounds like you need a few chairs. A light one to fling in and out of your car and a 4×4 one for seeking out nature with. Hoping you get what you need and yeah, I too am willing to fling a few bucks your way to make it happen. The power of many and all that!
Tanis, my heart breaks for you and Jumby! Why are people so damned ignorant? We have a son that lost his arm in an accident and people still stare at him .. it makes me furious!! At first, it didn’t bother him, but now that he’s a grown man he’s withdrawn from any kind of social activity. I can’t even imagine how you feel; you’re such a TERRIFIC MOM .. keep up your great attitude … we can all learn a lesson from you!
Twitter Name: LadyinGrey
I cannot *believe* that people won’t help you with doors or move from seats next to wheelchair spots. I am just appalled by such rudeness. That said, Tanis, you have opened my eyes to the joys, heartaches and struggles of families with disabled children. I’m in tears thinking of people not looking at or talking to Jumby, or giving him Halloween candy. Your posts have made me resolve to treat any kid, no matter his or her ability, the way I would treat any other kid. By talking to them, engaging them, smiling at them, and including them. And I know you’ve said “no” but I’d also be in for a buck or two to make your life and Jumby’s easier.
This is how eyes get opened.
Thanks, Aiming Low.
Love you T.
I needed to read this today. On a day when I am lucky enough to have a minivan for my two children who can move without being in a wheelchair.
Thank you, Tanis. I hope you get your pimped out minivan with the yellow flames someday.
Twitter Name: Motherscribe
Tanis, to get through the doors you go first then pull him out backwards. And I love the idea of the flaming minivan!
Some people are so clueless I could just spit. Your son is a person who just happens to be a quad. That doesn’t mean he’s any less of a person. Gawd, some fricken people!
Is there any way insurance would help cover a van? I’m not sure how Canadian insurance works. I work for a company that provides home care for spinal cord injuries and the majority of our clients had insurance help provide a vehicle with lift/ramp.
ps- Way to be an awesome Mom. :)
Twitter Name: LoLately
You’d think for the money they charge that wheelchairs would be light as a feather self lifting and unbreakable. They always say build a better mousetrap I say someone needs to design better wheelchairs
Twitter Name: habanerogal
Tanis,
Just a note so you know the people you have effected. I was raised not to stare at anyone disabled, not to look. I was told it was rude. Shortly after I began reading your blog my youngest daughter began to play softball, and one of her teammates has a disabled younger brother. I always take our chihuahau to the ball park and all the kids love to run up and pet him, impossible for the little boy strapped in the wheelchair. In the past, I wouldn’t have walked over and handed the little one the little dog, because of how I was raised. I do now and my little friend looks forward to Saturday games and holding and kissing the little chihuahua. Thanks
That made me all misty eyed. Thank you for sharing that. You and your little dog rock.
Twitter Name: Tanis Miller
Are you kidding me? I know stupid people can suddenly “not see” somebody with a disability, but refusing to move so you 2 can sit together for a movie? That may be one of the most selfish (and stupid, who the hell cares that much where you sit in a theater, seriously?) things I’ve ever heard.
Imbeciles, seriously.
I love you to death. You already know that.
xo
Classic Tanis: deeply funny and achingly sad and righteously angry all at once.
Peripheral note – I don’t want to live in a world where there’s something wrong with monkeys humping footballs.
Twitter Name: twobusy
Thanks for the big lump in my throat, Tanis. …wow. You come to Texas, and I’ll gladly give you our minivan–I’ll paint the Canadian flag on top for free.
Twitter Name: Ronald Mattocks
I can relate to every word that you wrote, Tanis. My son has many of the same limitations/superpowers as Jumby. It crushes my heart to know how society does not look out for the most vulnerable among us. The technology that our children (and our backs) need is avaliable under other names. (I see lifts on the back of trucks used to move heavy appliances, I am sure that they did not cost as much as the vehicle that they are installed on-which was the case with the modification we did to our van for my son.) It is wrong that when a piece of equipment becomes a need, instead of a want the price becomes so astronomical as to be cost proibitive to the family members that are usually already spending more than family members of typical children. Tanis thank you again for sharing your story. I hope soon to see pictures of you and Jumby tooling around in a minivan with yellow flames and blaring Billy Ray Cyrus from some seriously kickin’ speakers!
Wow. There really are a lot of asshats out there, aren’t there?
One of the compliments my mom got after working with a boy with cerebral palsy for years was she was the only one who never saw the chair.
Can’t imagine how angering and enlightening it is to have a child that no one sees. You, my friend, have a wild and powerful spirit. You are Jumby’s protector, advocate and biggest fan.
Thanks for sharing snippets of your life with us.
Twitter Name: jackiyo
I have an elderly mother who is now physically disabled due to arthritis and she’s going blind as well, and a little forgetful. But I digress. I am constantly shocked at how inaccessible so much of the world is and I constantly harass mangers to make things better. We were at the theatre on Sunday night and my mother had to use the disabled washroom and the toilet was almost on the floor but there were bars on the wall. I complained to one of the staff, a raised toilet seat is needed in disabled washrooms. I complained to the staff at the dentist’s office as well. And to the bank manager because there was only one disabled parking spot. I keep complaining.
Tanis,
When you wrote your post about Trick-or-Treating with Jumby at Halloween, it opened my eyes. Just like one of the previous posters mentioned, I had been taught not to stare and not to bother the person in the wheelchair.
In November we hold our annual Christmas parade in town. Just down the sidewalk from me and my kids was a little boy in a wheelchair with a bunch of adults. No other kids around. I asked his dad if he would like to bring him over to sit with us because we had a better view where we were. His dad absolutely beamed when I asked him that. It made my heart happy to see someone so happy from a simple gesture. I talked to his little boy about the parade and my kids played peek-a-boo around the sides of his chair with him.
I plan to raise my kids that everyone likes to be acknowledged and not to leave anyone out, no matter what their status in life is. Thank you for making me open my eyes and my heart even further. Your sweet little boy and your entire family is so lucky to have you.
Greetings from Virginia Tanis & Jumby,
First time here & seeing your Redneck blog & I just wanted to say how freakin’ beautiful you are, but even more so is that beautiful, smiling face of Jumby. Wow, what a kid. Your family is so blessed to have you, especially in this cruel, & selfish world we live in. I love the button that flips the finger on the chair.
Please, someone, anybody, there’s got to be a way to get the donations flyin’ and get that bad-ass minivan & power chair. He deserves it & so do you. It’s been an honor to meet your awesome family Tanis. Thank You & Thank You Jumby.
From the Bottom of my Heart, Dawn
So, my sister is a physical therapy assistant and one day, their teacher made them all get into wheelchairs and go outside and traverse the city in them. By themselves. So they could see how others in wheel chairs are treated. It made a huge impression on all in the class.
People in general I think just don’t know how to “be” around you. My dad has a severe limp from polio as a child and people stare but won’t ask. But he also hates when he falls and we offer to help him up. It’s a strange place to be. You want to help, they may appreciate it, they may look at you scathingly “I can do it. Thank you” with a hint of frostbite in the tone. I help everyone, but that’s cause I like to. If the is appreciation I take the warm fuzzies with me, if there is not, I still take the fact that I helped and hope it made their day just a little better or easier.
As for the doors, I do this with my kids double stroller. I open the door with the stroller facing outside and back them in. It seems to work, it’s awkward, but I get them in with minimal strain. Works better when the door pushes in, but it still seems to work better than anything else I’ve tried.
I’m with the others, if I won the lottery, I’d hook you up with a wheelchair that didn’t hate you and/or a pimped out minivan. As it is, I’m just glad we have milk for the week. :/