Friday, February 02, 2018

Oh, The Places She Can't Go

This Little Miggy || Thoughts on Mobility and Accessibility

I hate stairs. Let's just start there.

Actually, let's back up. You need some context.

Lamp has two power wheelchairs. One is her "real" wheelchair. It's the wheelchair we got through our insurance company when working with a physical therapist in San Antonio. She started training on the chair when she was about 18 months old and we finally brought it home when she was 2.5 years old. Her second wheelchair was made for us by a local non-profit organization here in Ohio called May We Help. It was specifically made for her to use around the house.

See, her big wheelchair was not great for everyday home use. She couldn't get in and out of it herself because it's taller and she needs to be buckled in--something she can't do on her own. It did little to improve her independence at home. Her little wheelchair improved her life at home exponentially, but it is not something she can take to school. She can not travel with her little wheelchair. It was made in a garage, not in a factory. Therefore it has no FDA approvals and or manufacturing oversights. It is much more fragile. Occasionally we take it on outings, but it can't go on our car lift (and it would never survive a plane flight). So even though it is lighter, it is not necessarily easier to transport.

Well Lamp's "real" wheelchair battery just died. 4 months after we replaced her old battery. OK, so why don't we just get a new battery? GREAT QUESTION. It took about 5 months to get her battery replaced the first time and no I'm not sh*#ing you, because insurance companies feel pretty blah when it comes to a person's mobility. (To be clear, the chair still worked during this time but 5 months is ridiculous.) And it's not the battery this time, it's the motor and to be clear, right now her chair is not operational. And a motor will take at least another 6 months to replace. (Out of pocket this repair will cost around 4K.) BUT since she is eligible for a whole new chair, if we spend our insurance money (and time) getting a new motor then we will not be able to start the year long process of getting her a new chair. Yes, you read that right, it is a YEAR LONG PROCESS to be fitted for, get the insurance approval and to finally receive a new wheelchair. (Or in the case of this boy, over 2 years.) Of course if you know this ahead of time and can plan for your wheelchair not to suddenly crap out on you, then maybe this isn't so bad. But when your daughter has no mobility at school or in other public places right now and you're being told it will be 6 months to a year before she has access to mobility again, it's kind of a big deal.

Maybe you're wondering why we don't just pay for a new chair out of pocket. Another great question. Because a new power wheelchair will cost at least $25,000. Minimum. Some are upwards of $80,000. Here's one person's explanation of that insanity.

When we asked the wheelchair specialists affiliated with the local Children's hospital what our options are in the meantime, they pointed us in the direction of eBay, suggesting that we purchase a used power wheelchair out of pocket to tide us over for this next year long process. This is probably what we will do. And if you're thinking about suggesting a non-profit, or reaching out to the so and so's, I would just like to say it's not about the money. It's a broken system that is failing a lot of people and it shouldn't be this way.

And now I am a bubbling brew of anger, sadness, frustration and even a little dash of rage. O-rage-eno, if you will.

And with this current crumbling of mobility and the abyss of waiting, waiting and more waiting I have been having a general accessibility crisis. I am feeling all the strains of a life that is intricately connected to and heavily dependant on a mobility device, insurance companies, and accessibility in it's most basic forms.

Which brings me back to the stairs.

I hate stairs. To see a set of stairs is to see a blockade. An invisible to most, but obvious to us, you're not welcome sign. A S.O.L. sign. It's not just inconvenient. When you have a wheelchair, stairs are an impasse. Or in our case, when you have a daughter in a wheelchair. And, even more specifically and more difficult to work around, a power wheelchair. Lamp's old power wheelchair was a relative light weight at 130 lbs. Two people could lift it into the back of the car if necessary (and it was often necessary) or up a stair or two. But most power wheelchairs typically have a starting weight of around 300 lbs. and there is no jimmying that thing up a stair or two.

And they are everywhere these damn stairs. Yes, the Americans with Disabilities Act, or ADA, made it illegal for federal buildings not to have accessible entrances and exits  except if it threatens the historical significance of the building or structure. Try living in a gem of an old city that (for good reason) cherishes it's historic architecture and old homes. And yes they are beautiful and historic, but they are often unflinchingly, unapologeticly INACCESSIBLE.

For example, this past Christmas break my older two girls attended a theatre day camp in a beautiful arts center that sadly, did not have a ramp. Of course the good people running the camp offered to help carry her wheelchair up the stairs. But I knew better. So instead of bringing her larger "real" wheelchair we opted to bring her smaller, custom wheelchair because it is lighter and easier for me to carry up the stairs. Please note: To carry it up the stairs I must remove the battery in the back and carry that up the stairs first. Then go back down and with my 10 year old daughter's helping, carry the rest of the chair up the stairs, open the door, replace the battery, easy peasy lemon squeezy. Doing this exercise twice a day in frigid temperatures brought some of this anger to a low simmering boil.

Oh, the places she can't go. 

You know this past year we saw the toppling of historical statues in many cities in the South because while history is important, the context in which we celebrate and remember that history matters. The lessons of the Civil War should be forever remembered, taught and discussed. But statues celebrating Confederate generals--in essence celebrating slavery and racism--have no place in our world, no matter their beauty or historical significance. Because when choosing between a historical statue or living, breathing people with blood in their veins and beating hearts we choose the living, breathing, beating-heart people every time.

It should be no different for beautiful, historical buildings and the living, breathing people with beating hearts who want to ACCESS those buildings. The decision should not be tough. People over history. We got a man on the moon in 1969. Why do we care more about getting a man on the moon when we have people on earth who can't get to arts centers and bagel shops? Sigh. Then again, it did take us until 2017 to tear down Confederate statues.

And then there are the private residences. People's homes. When we go trick or treating or caroling--even in our current neighborhood that is mercifully flat--there are stoops and front porches, sidewalk steps and curbs--that keep our girl from going with her sisters up to the front door. Of course we've adapted. The other two girls ring the bells and come back down to the rest of us, or they stay and point to their sister while the givers of candy smile and reach in their bowls for an extra big handful to take to the little girl in a wheelchair. And every now and then I think about how strange it was that there was ever a time in my life when a set of stairs felt like nothing. In my best Jerry Seinfield voice I now often think, What's with all the stairs?
This Little Miggy || Thoughts on Mobility and Accessibility

And play dates. A friend invites her over. I smile. Thank you. That is so nice! And I try to gauge if we can switch the play date to our house. Will they be offended? Will they think I don't want to come to their house? Please understand, it's just easier on our home turf. In theory we have no problem coming to you, but in reality you probably have stairs somewhere on your property and while you may not realize it stairs are the least inviting of all the things in the world to a little girl in a wheelchair, so can you just come to us? Again? Always? 

And that works for now. Mostly. They come to us or we bring her small chair and go to them. Sometimes we forgo the chair altogether because she's 7. She scoots on the floor and makes her way around and it's no big deal because, again, she's 7. But it will be big deal some day. When will she no longer be OK without her chair, scooting around on someone else's floor? 8? 10? 14? I don't know, but it's coming. And then what? Will they always be OK coming to our house? Will the invitations cease? Will friendships and relationships be strained because of inaccessibility? Maybe her best friend will live in a one story ranch, I think. I hope.

On the one hand it feels ridiculous to have this inner resentment to the stairs I see on nearly every home, on every street, in every town. It's not personal, I get it. But on the other hand, every home with a porch or a stoop or more than one step is a home my daughter won't be able to access in her wheelchair, a mobility device that she is intricately connected to and heavily dependant on. And any which way your slice it or dice it, that is a sad, frustrating, heart-aching realization.

Oh, the places she can't go. 

When I say these are the things that keep me up at night, I mean I literally got out of bed at midnight to write all of the above because it was KEEPING ME UP.

I once said, "I want the world to make space for my daughter. I want it to be accessible by wheelchair and accessible by opportunity." As I've learned, accessibility is more than wheelchairs and ramps. But in order to access opportunity you need the most basic access first. You need mobility. You need ramps and wheelchairs. You need access to buildings where learning, working and opportunity take place. (Preferably not around the back on the trash ramp. Been there, done that.) You cannot grow relationships if you can't get into the places where people go to hang out, play and talk.

We'll most likely continue to adapt. And of course I'll keep speaking up, spreading awareness and raging against the machine with the hopes that one day I will be able to say,

Congratulations! Today is your day!
You're off to Great Places!
You're off and away!

You have brains in your head. 
You have wheels on your chair. 
And all the buildings have ramps 
and elevators everywhere. 

You can be on your own because the world has made it so,
you have access to decide wherever you go!

Oh, the Places Everyone Should be Able to Go. 

22 comments:

  1. wow...eloquent. painful. saddening. stunningly real, filled with power and anger but also strength and fortitude. I've been reading your blog for a while now and can only say that your commitment to your children is fierce. I admire you very much.

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    1. Thank you. It's been a heavy feeling to carry around...it always feels good to unload in writing.

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  2. In a striking example of the Interconnectedness of All Things, a fandom site I frequent had a link to this:

    https://www.youtube.com/watch?v=m2kWU3_8tn0

    No, it's not about wheelchair access per se, but it is an example about how the built environment reflects what the privileged feel is "important".

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    1. That quote is dead on. Can't wait to give it a watch.

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  3. Anonymous2:41 PM

    The hate for stairs is real. I live in India and things are much more worse here. "Oh the places everyone can go"

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    1. Burn all the stairs to the ground.

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  4. I hear everything you are saying. As an adult wheelchair user, I can tell you it's not as much the stores and the restaurants and other businesses, though there are access problems with some of those too, but the impact on the social life because almost everyone's home has steps somewhere and not always an accessible downstairs bathroom. I don't have a power chair but for me to visit there have to be people who can/know how to bring the chair up steps if it's a few, and when there's a big flight, people strong enough to actually carry me up the steps. It's awkward. Also, there's not enough accessible housing, especially in areas where there's not so much new construction. I live in an area where there are lot of Victorian houses, and when they convert them into offices.. went to an appointment at one, there was a ramp (not a good one) that led to an accessible entrance, and I was so mad when I opened the door and there was a gigantic potted plant blocking the entrance, and even more annoyed when the office person said I should have called and told them I was coming.

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    1. Shannon,

      As weird as it sounds I KNEW this was going to be the answer I would hear from adult wheelchair users, but in the back of my mind I was like, "No...they'll be another answer...someone is going to share with me some magical secret and it's not as bad as I think..."

      It just sucks. Everything you said...about the impact on one's social life, and the lack of accessible housing. That is another thing that just infuriates me. And the RIDICULOUS idea that a person with a disability should have to announce themselves before they go somewhere...this is craziness. Thanks for sharing your perspective. This is why it's so important for people to keep talking and sharing because most of us have no idea. I had NO IDEA how much these things could impact a life. Thanks again. XO

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  5. It's maddening. And I'm ashamed to admit I hadn't ever really thought about it before. But that is wrong. I'm comfortable in my place of privilege as a non wheelchair user and so I didn't have to think about it. But thank you for helping me see and learn and understand.

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    1. Barb--It's not YOU. You shouldn't feel ashamed. I mean, thank you for caring and thinking about it, but for me it's another testiment to the fact that disability rights are given very little consideration overall in our society. You didn't ever think about it, because the world at large does a very poor job of thinking about it, talking about it and making these issues and the solutions a priority.

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  6. Anonymous6:10 PM

    So I'm just somebody who likes taking things apart/fixing things myself and has a family member who will always be in a wheelchair, albeit a manual one as of right now... They're heavy, as is the chair, and stairs do suck. Can't imagine how that's gonna work in a few years (it's not).

    If the chair is built by a company who is not building custom motors in house, but rather buying them from a motor company, you could possibly buy the same motor or an equivalent and just swap it yourself. Or take the motor out and bring it to somebody who knows electric motors. Although I feel like the chair is an item that is built so that DIY fixes are difficult, like some modern cars and new phones, but I don't know. If it wouldn't void your ability to make insurance fix it, I'd have torn the thing apart by now. It already doesn't work so I probably won't make it any worse.

    Of course, insurance should stop being dumb and just fix it. Get a lawyer to send them a letter or something. It's ridiculous that it comes to the point where you're better off buying a textbook on electric drive systems than waiting for the chair company to fix it.

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  7. Thank you for sharing this! I have three children each with no physical limitations, and it is easy to miss all of the detail of this difficulty. I am a commercial interior designer and this has made me even more passionate about accessibility in design. I am now thinking about all of the obstacles and the logistics of a Mum like you or an individual that buildings and public spaces can present. I am also a lecturer at a university in the bachelor of interior design course and I will be showing my students this blog. In Australia we have Australian standards for accessibility and we also have the DDA, disability and discrimination act that we need to comply with, but your blog vividly illustrates the real stories behind these black and white documents and I hope it will help to embed conviction in our students that complying is not just a legislative requirement, it is a human response. And not only that, I hope that we can produce a new generation of designers who are thinking beyond legislative minimums, to ‘who are the people that may need to use this space? Are there any obstacles regardless of what I’m ‘required by law’ to address? So thank you! As I head into a new academic year, this is a beautiful reminder.

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    1. Jaime,

      Thank you. It means a lot to me when my blog is used for educational purposes. And I LOVE when you said, "I hope it will help to embed a conviction in our students that complying is not just a legislative requirement, it is a human response." AND yes to thinking beyond legislative minimums. So great. Thank you.

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  8. Oh Miggy, I have tears in my eyes for both you as a mother and Lamp. It sucks. I'm with you, ever day, with my little Tough Guy. It's like you were reading my mind. I really wish there were easy answers. I seek daily to figure that out. Our school playground is a nightmare and it is slowly chipping away at Tough Guy's happiness at school. Not sure where I am going with this except, from one mama to another that gets it. Sending a hug.

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    1. Jill--Oh yes...the playground...we've been there. When a 1st grader doesn't want to go to recess and eats super slow, or offers to stay inside and be a helper, well... it was heartbreaking for me. She likes it more now, but last year we definitely had a rough patch. I finally contacted the school to see if we could get some special equipment just for her.

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  9. My visiting teacher has M.S. and relies on a power wheelchair completely. She is my visiting teacher because we have one of two houses in the whole ward that are wheelchair accessible. Even then, she has to go through the entrance to my husband's piano studio (where the ramp is) and navigate a narrow door into our main house. Her four children have all had to modify their homes so that she can come and visit them.

    One of my husband's students takes piano lessons from him because his mom has C.P. and she can actually come to her son's lessons because we have a wheelchair ramp. I hadn't even thought of that as an issue before they told us that was the main reason that they decided to take lessons from my husband.

    We didn't even think of these things when we picked our house, we just needed a house with a separate entrance for my husband's students, but I'm grateful that we have our ramp and it's made me more aware of issues of accessibility.

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    1. I get that most people don't think of these things, but it's kinda crazy we don't because 25% of us will become disabled at some point in our lives. You would think that KNOWING we all have a high chance of becoming disabled that people would care more. I am starting to hear more about people building their homes with consideration for accessibility down the road, but it's probably just because I am in tune to disibility issues...I'm not sure it's on most people's radars as much as it should be.

      Also, "her 4 children have all had to modify their homes so she can come visit." Yep. It's a reality. If there is someone you love in your family who has a wheelchair and you want them to come visit your home, you NEED AN ACCESSIBLE HOME. Period. I can tell you that it sends a very strong message when accessability is not considered.

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  10. Thank you for acknowledging the enemy called stairs! My daughter and I both have physical limitations and everyday stairs are my number one anxiety. We can get up them (eventually) but need railings, which are on ZERO houses in our neighborhood. I am just constantly shaking my head in agreement with you about playdates, schools, things to make them included and independent. I have dealt with it all my life but vow to try and change things for my daughter.

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  11. I live in a non-accessible home and coach wheelchair tennis. Many of my friends are in chairs and it is frustrating that we don't have an easy way for them to visit. We have a modified "ramp" that we can use to allow them to come inside, but not without assistance. We have a very small 1/2 bath and considered changing it when we remodeled our kitchen but it would have doubled our costs. For now we make do but when/if we move, accessibility is a must!

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  12. Miggy, this was so heartwrenching to read. I share your rage.
    I'm not a wheelchair user but I have a couple of good friends who are, and through them I've become aware of just how limiting a single step can be.
    I've had to do the 'but are there steps?' sleuthing many times when going out with them. They have never come over to my split-level townhouse.

    I'm an architect, so I deal with the accessibility issue at work, daily. Our building codes are much improved now here in Canada, and all new projects I work on are accessible (I don't work in residential, where we still have a ways to go). Yet I often get the client complaints at all the accessibility design items... "Why is that universal washroom so big?" "Do we really need that corridor to be that wide?" "Does every door need to be accessible width?". YES, YES we do.
    Sometime's it's even colleagues who get annoyed. I see that it's a depressingly long road still to get everyone to understand how very essential this is.

    On a brighter note, there's an initiative in Ontario and Quebec that's doing a little bit to remediate the problem of older, inaccesible buildings. They make portable, removable ramps and give them to small businesses that have one or two steps at their entrances.
    These businesses often do not have the means or possibility to remodel their spaces, but these simple colorful ramps make all the difference.
    Volunteers help build them and paint them. I see them in many shops around my neighbourgood now. An initiative like this one might only be scratching the surface of the stairs problem, but it's a good way of bypassing many of the reasons buildings don't get ramps retrofitted.
    Thought it might show you a ray of hope to an undoubtedly sucky situation.

    http://stopgap.ca/
    https://montreal.ctvnews.ca/creating-a-more-accessible-city-through-ramps-1.3331168
    (The Chris guy mentioned in that article is my friend, he's a power chair user living in an old city full of steps).

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  13. Anonymous1:52 PM

    Wow. Thank you for writing this. And I am sorry. So sorry. Truly. Life shouldn't have to be this difficult for anyone. This is heartbreaking.

    You are a warrior. And you should be proud of yourself and your daughter(s).

    I am stunned at how crappy (that's too soft of a word) the insurance companies are in this regard. The hospitals, even! I mean, WHAT?"

    But in the meantime, what can we do? Lobby our politicians? Who do we contact? Insurance companies? Ugh! I'm going to start looking into this. We don't have accessibility/mobility issues in our family (our "special" needs are different), but we're part of the same family. That is, the human family.

    Fight on!

    -Roxana

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  14. Insurance is such a blessing and a curse. You're troopers, Miggy and Lamp! You are blazing new, amazing trails!

    On "Fixer Upper" they just did a wheelchair friendly home. I was curious what your thoughts on that were. https://magnoliamarket.com/our-show/episode-10-copp-house/

    Still love reading your blog! Melanie VDG (you know me from Manhattan)

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