ADA Compliancy: How Much is Too Much?

As a mother of disabled children, I can fully appreciate all of the upgrades that the ADA has provided to make it easier for disabled people to get around in the city. There are tweeters on the crosswalk signals, so that the blind can know which direction is safe to cross in. There are little rails in every bathroom, so that people can raise and lower themselves onto the thrones, there are doors that open automatically at the push of a button. If you are in a motorized scooter, you can drive around town in that, because every sidewalk curb has been gently sloped for ease of rolling.

These can be some very wonderful additions to any town and city, to make life easier for those already struggling to adapt to a normal life with big obstacles. When I see businesses that are ADA Compliant, I notice and I thank them by spending a bit of my hard earned money there. I do the same when a place goes a step above the rest, and offers something that is not required, but is useful.

I am really struggling with a few things though. In our area, there is a guy who is not disabled, who goes around everywhere, and sues businesses that have something that is not 100% compliant. "Wow! That is some dedication! What a noble cause!" Right? Well, because of his lawsuits, some places have shut down, and others have had to find a way to comply. If these were major issues, I wouldn't care, but now they are affecting MY disabled children in a bad way.

For example:

My mother lives in a gated community. There are special handicapped units, with wider doors, lower counters, open shower, and handrails. The parking space is less than 20 yards from the door of the apartment, and you can roll there without hindrance, as well as all around the complex, and into the pool area. The pool and spa had to be fit with taller hand rails for entering the pool, and that was done. Once upon a time, the pool has a bathroom, where a person could go potty while spending time in the pool area, but because the complex is unable to adapt that bathroom to ADA standards, it had to be permanently locked up.

OK. So a person in a wheelchair can stand up, step down the steps and go swim, but they can't stand up and sit down on a toilet? Ok, I guess I can see that line of thinking. Barely. Here's the thing, not all handicaps are the same. My children have skin that rip and blister with the slightest of friction, and walking TO the pool from Grandma's house is hard on their feet, even protected. By the time they get to the relieving cool waters, they are already fragile. After swimming in water for awhile, they have to potty. We used to just carry them over to the bathroom, and assist them through the processes. Now we have to bandage their feet, add socks and shoes, walk to the apartment, undress, redress, walk back to the pool, unbandage and ease back in. If the pool waters weren't so healing for their skin, one might consider it a big hassle.



I do understand the logic on much of the ADA rules, but there is another one that is making no sense when it comes to practicality. They have started putting these yellow bumpy plates in the sidewalk ramps.





The knobs on them are hard and pointed, spikey almost.



When they first got put in on our neighborhood sidewalks, I thought Oh, those must be to help the wheel chairs get traction up the slope. Which soon proved very confusing, as the gentleman in a motorized wheel chair who lives in my neighborhood started going around them, and driving on the street instead. After a few weeks, my oldest went out to rollerblade a bit. Not 5 minutes later, I am running out into the streets to her screams of pain. She had tried to go over the yellow plate, it locked up her wheels, and threw her to the ground. The yellow plate collided with her knee, and she had a 5 inch diameter wound across her knee and a sprained wrist that took weeks to heal, along with many other wounds from the landing.

We talked about the yellow plates, and agreed that they weren't for wheels of any sort (they wreck havoc on your eggs coming out of the grocery store too). A few months later, I am again running outside to screams. She was WALKING on the sidewalk, and when her feet came in contact with the yellow plate, the feet stopped, and her body kept going. The jarring motion dislocated her patella, which knocked back into place when she landed (on the yellow plate). The wounds from the fall were again nasty, and took time to heal. It's hard to hobble about on crutches, when your palms are blistered up and raw.

So now, we the disabled are actively avoiding these ADA yellow plates, as they cause us too much damage and absolutely no assistance. Whatever purpose they serve, I only see people of all types avoiding them. Easy enough, they are only on the sidewalks, right? Wrong.

These were taken by my hunny recently, in our own small suburbia.


Can you see the raised CURB protecting the yellow plates? There is not a sidewalk here, yet they painted a crosswalk and added the yellow plates at all the corners. The curbing is avoided by motor wheelchairs and bicycles alike, as well as by the vehicles that need to turn. The bicyclists swerve out into the lane of traffic to negotiate these areas, as do motorized wheelchairs.

Same Neighborhood, no plates:





This last one is again, in the same neighborhood, yet they carved out the area for the plates, and there is no sidewalk in sight!!!


Honestly, this is taking it all a bit too far, and is a waste of our tax dollars.

I am not saying that there shouldn't be ADA rules and compliancy, but I think some Common Sense should be used in creating and enforcing it, and I think that people that have no disabilities have no business suing businesses and towns over something that MIGHT not be needed. I am saying that when the rules that are designed to help ease the life of the disabled is now harming the disabled and are not USED by the disabled, there is a problem.

Precious little Butterfly Feet

Image from last summer. Penguin spent a good 20 minutes flirting with Flutters, much to her enjoyment.

A few days ago, I asked my friends on FB what kinds of things I should blog about. I was hoping they might have things they wanted to hear more about, and was surprised by some of the answers. Answers ranged from Large Family Living, to EB, to G*d, to gardening and more. I wrote all these ideas onto my notebook, so that I can write when I am offline too. I'll slowly cover each topic as I am able to. Some topics will flow easily, while others will struggle with each sentence.

So, what shall I write upon today? I could write about the energetic Jumping Bean that is chanting "Mine. Mine. Mine. WEEE! Mine. Mine. Ma. WEEE!!" as she climbs up the end of the bed, grabs my blanket and quickly slides off and onto the floor. I could write about the health of my family, and how we have been sick one way or another since November. During about a week of reprieve, my back went out, and made life interesting. I could write about how I am cooking these days, to keep from roasting the house in this 82*F spring weather, but that might be mean, since half my friends are under several inches of snow on this beautiful spring day.

Warning, below are some graphic pictures of wounds. If you are not able to handle those kinds of photos, I suggest you click away now, and go read on of my older posts. :)

I do have a large family. I have 5 children, 1 step child, and an extra child or 2 that come for watching while their mothers are working. In a nation where the "normal" is 1 or MAYBE 2 children, 5 is a HUGE family. To me, it doesn't seem that way though. There are people missing. Well, my stepdaughter is missing, for one. The rest of the missing people I have no clue who they are. When my house is so full, that it is bursting at the seams, I can still feel a quiet tug "Someone is missing". I count heads, quickly making sure I know where everyone is. My head count is right, but my heart says differently.

When it is busy, and things get a bit messy, accidents can happen. Sometimes people don't look where they are going, or get in too much of a hurry, that they cannot see around them. When this happens, someone gets hurt. With the older kids, injuries are more easily dealt with. I do not have to convince them to let me do things to their hurting limbs. They have already learned that if I take care of it, it will stop hurting faster, and they can resume their fun. But with little Flutters, it is not that easy.

She knows that she hurts. She desperately wants Momma to take away all the pain, and to magically make her all better, without using scary tools like scissors and needles on her body. For the last 2 years, this has been a horrid battle of wits, and tears. I absolutely HAVE to tend the wounds, drain them, and bandage them. Wounds like this one, if left alone, can grow and grow, painfully separating the layers of the skin, and filling up in a vicious cycle.



You can see at the edges how these 2 wounds had filled too full, and started traveling. This process is painful too, but I discover these kinds of wounds late in the night, when she is kicking and whimpering in her sleep. I have to tend them immediately, so that her pain is stopped.



In these photos, her feet were actually looking pretty good, except for the big blood blister. These days, they are looking very raggedy. She tries so hard to keep up with her brother and Jumping Bean. I do all I can for her precious feet, but it is not enough. She has lost several toenails, and the shape of her big toes has changed some from the scarring. There are no shoes she can wear that I have found yet. Socks do not protect her tender feet near enough, and I grimace every night when I take them off her, afraid of what damage I will find hidden under them. I buy white socks, but by the end of each day, I am lucky if they are just brown or black from the dirt, but sometimes they are red and brown from the blood seeping through bandages or even from new injuries that she didn't complain about at the time it happened.

WHen the wound care is done, no matter how much she fights me, or how much she screams, the moment that last bit is secured, and I am done, she looks up at me with her blue tear filled eyes, and says the best words ever:

"Thank you momma. I feel better, so much better" and she starts singing her Doc Stuffin's theme song.

A raw look at EB

WARNING: This post is about a genetic skin disorder, and will have graphic pictures of wounds. This post is not for the faint of heart.



My children and I have a genetic skin disorder called Dominant Dystrophic Epidermolysis Bullosa (DDEB); it is so rare, that doctors only learn of it in their text books. If I find a doctor that HAS seen it before, they are always amazed to have encountered it again in their lifetime. That said, I am connected to over 500 people whom EB has effected or affected. I suspect that number is even higher. A great place to learn in depth about EB is at http://debra.org or at http://ebinfoworld.com

Not everyone wants to click back and forth, so I will sum it up 2 ways. The first is to say: Basically, or skin is not properly glued down to our flesh. We are as delicate as the wings of the butterfly. Better yet, let me explain it in a more visual way. Imagine for a moment that great empty schoolyard field. The grass covers the dirt, and the kids can play football or soccer with no problem. The grass MIGHT even be rooted well enough, that if someone drove out on it, no harm is done. Now imagine that same field, soaked by the rains. When that vehicle goes out on it now, the tires spin, the grass lets go, and muddy mayhem follows. Your skin (the grass) would be the field in the dry times, with deep strong roots keeping the damages of life (the vehicle and the kids playing) from drawing blood (mud). Our skin, the grass has weak and damaged roots, so even in dry times, it sloughs off as though some punk was out doing doughnuts on the soaked field.

Clear as mud, right?

I think you get it, and if you don't, a few pictures will help.



My oldest is 13 years old now. She was sitting out back on a swing, and lost her balance. She slipped off the swing and landed on her knee in the soft grass. Her entire knee lost it's skin. 5 days later, and it is still painful and tender and carefully wrapped. We can't use traditional bandage supplies, as bandages can cause as much damage as life does!



This is my youngest's foot. She gets damaged from walking, just walking. She also has to be patched up often for stubbing her toes, or kicking the bouncy ball, or getting stepped on by others.



These pictures show how I might wrap a foot with only 1 toe involved, leaving the rest to get fresh air.







None of the bandages would stay on, if I don't wrap up past the ankle.



It's so much easier to see the bandaging happening than it is to see the fresh raw wounds... It's easier to hide it all. Sweep it under the mat and pretend it isn't a part of our day to day life. But I can't. It is a part of us. It makes us the strong people that we grow to become. Our disabilities do not hold us back, they teach us how to FLY and to reach for the impossible.

It's like that tow truck on that Pixar Cars movie. The battered tow truck is offered a chance to have all his dents fixed and all the scratches buffed out... the chance to be a whole new truck. Does he leap at it? No. He tells them that his scars were his memories, a road map of all the fun and scrapes he had gotten himself in, and he didn't want to forget a scratch.



Yea, we have some rough times. Life isn't all unicorns and rainbows. We cry. We ache. We hurt.





Life is all in how you look at it though, and without the rain, we cannot have rainbows. In my house, we look at the good, and use it to grow strong. We weren't given this body to cry about the hardships... we don't have time for that.

I post this, because it is a part of us. It is part of who we are, or more importantly, WHY we are who we are. I post this, because if I don't, then I am still hiding it and then I am not truly being myself. I don't mention it often, but I refuse to hide my scars. I refuse to hide my bandages. I refuse...

https://www.facebook.com/irefuseeb Learn more about "I Refuse" EB Awareness campaign.