Why I’m Glad HUD Secretary Carson Got Stuck in an Elevator…….

This afternoon I read an account of Secretary of HUD Dr. Ben Carson becoming stuck in an elevator in the midst of his “listening tour” of affordable housing across America.

And I have to say, I’m more than glad it happened.

No, not because I don’t agree with some of his policies or political beliefs. I respect Dr. Carson so much as an uber-talented neurosurgeon and his story of growing up poor in the projects and being raised by a single mother to rise to where he is today is truly inspirational.

So why am I glad for the misfortune of someone I respect?ย  Because it shows how low-income housing has taken a back seat to quality. As if it doesn’t matter that the elevator doesn’t work because they are poor people anyway so why fix it?

This is the same attitude to the one found in my old HUD building where I lived for almost 3 years before my husband and I were married. The elevator was so old and seldom worked that one summer the leasing office asked us not to use it because it was overheating from use……for a building full of elderly and disabled persons this was not acceptable.

Do you know what ended up happening? When the building was bought for local college student housing the elevator, deemed not fixable before, mysteriously was fixed and the ENTIRE inside of the building was gutted and renovated for the new tenants.

Dear Dr. Carson, you have now been reminded how the other side lives on a daily basis. Here is your opportunity to fix it. To give low-income housing the dignity and care its residents deserve.

Please take it.

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Not Acting: How to Advocate For Yourself When You are a Young Adult With a Disability……

Now before I get into our topic of the day today, a small caveat: The particular person mentioned in the post below meant no harm, even though they didn’t think of the implications of their words. I wish him no harm, so please be kind in the comments (As always I reserve the right to delete any and all comments that are rude and disrespectful ๐Ÿ˜‰ )……


Regrets. We all have them. Things we wished we hadn’t done. Or things we wished we had. Today I wanted to talk about an experience I had in college and what I wish I would have done……..

Our church denomination makes bulletins that follow the lectionary for the entire church. However, not all churches in our denomination use these bulletins. The church I grew up in does not. They make their own.

The denominational newsletters more often than not use photographs of stock images, ect…to convey the message of a particular Sunday. Sometimes pictures used would be of a church in the area or some such.

While on summer break from college one year, I attended my parent’s church (the church I grew up in). A member approached me after services one Sunday with an idea. He had been picked by our denomination to produce a concept for a new set of newsletter covers to be distributed to churches denomination wide. The scripture used would be Luke 14:12-14…….

“Then Jesus said to the man who had invited Him, โ€œWhen you host a dinner or a banquet, do not invite your friends or brothers or relatives or rich neighbors. Otherwise, they may invite you in return, and you will be repaid. 13But when you host a banquet, invite the poor, the crippled, the lame, and the blind, 14and you will be blessed. Since they cannot repay you, you will be repaid at the resurrection of the righteous.โ€โ€ฆ

Now of course we don’t use words like, “lame” and “outcast” to describe people with disabilities anymore. Those words are terribly outdated and offensive. Thankfully other translations of the bible use more appropriate wording that doesn’t change the meaning of the original passage.

But semantics isn’t the point of this blog. I want to focus on my conversation with this producer.

After he approached me to ask if I wanted to be a part of the photo shoot, he described his idea. I would sit in my wheelchair in the front row of the church next to all the other disabled people from our church. Then we’d hold hymnals and pretend it was a regular church service as photos were being taken.

As a young adult, I instantly had a few misgivings about this concept but didn’t immediately decline to participate. The first of which was that all the disabled people in our church didn’t sit together in a group. Not that we all didn’t like each other, we just chose to sit with our families.

The second misgiving was that, at the time, I didn’t use my wheelchair during church. Just crutches. I even suggested I would just use my crutches during the photo shoot. After I mentioned this concern and the follow up suggestion, the producer looked at me a bit smugly and said, “Just pretend you are acting! You are playing a role!”

Um, what??

Now the 37 year old me would have laid down a litany before him of why that statement was offensive and SO rude to even say aloud. But the 21 year old me just stood there in disbelief. Wondering how anyone could think that suggestion was OK.

And in a move that has haunted me every day since, I decided to go through with the photo shoot. After it was over I ran into the bathroom and cried. Feeling so ashamed that I hadn’t spoken up and told him I wasn’t going to participate because it was an offensive idea. The idea that I can pretend to be disabled.

My life is not pretend. Every day I wake up in a disabled body and go about my day. It is not an act.ย  And years later I wish I had stood up for myself and told the producer that what he was doing was damaging and exploitative.

So what should you do when you are young and a situation like this happens? I have a few options for you below. Things I wish I would have said:

1. “No.” Just simply say no. Don’t feel pressured to give a further explanation. You don’t owe anyone an explanation.
ย 
If you’d like to give an explanation, say:

2. “I don’t feel comfortable pretending that way.”ย 

3. “Doing this would make me feel exploited.”

Being asked to do something you don’t want to do or feel uncomfortable doing can be awkward. But advocating for yourself in these situations can help others to understand your point of view.

Cheers!

ย 

My Gratefulness List……

Yesterday on the blog I shared about my stupid freak accident that boogered up my foot. Today I am reflecting on all the things I’m grateful for despite having to be couch-bound for the next few days:

  1. The inventor of sponge baths: I don’t know who came up with this concept, but I’m a big fan. Because I’m unable to completely submerge myself in a tub of water (cool water. I may be taking cold baths for the rest of my life, just as a precaution), a washcloth, sink and a bar of soap have been a god-send. Especially for visitor’s noses. Seriously, I was smelling pretty rank till yesterday. ๐Ÿ˜€
  2. Dry Shampoo: Although I’ve been able to give myself a sponge bath, I have yet yo MacGyver a method to wash my hair. The two cans of dry shampoo I received for Christmas last year has come in quite handy.
  3. Working internet: I’m SO thankful for working internet so at least I can chat with friends if they aren’t able to come over and visit me on the couch in all my dry shampooed glory.
  4. A loving and patient spouse: Since being confined to the couch, I’ve not been able to do the every day things around the house that I normally do. So Chad has picked up some of the slack. He’s done this without complaining. He’s also graciously ran interference with the youngest, gently picking him up and putting him at his food bowl when he tries to eat from his sisters bowl. To top it all off, he made sure we had a beautiful anniversary breakfast on Wednesday morning, complete with a dozen roses and a box of donuts. โ™ฅ
  5. The sweet friend who has been changing my dressing twice a day. She is the future of medicine and that future is full of hope. She makes a house call right to our couch to check my healing process and change the dressing. And she does all this with a smile and a joyful heart. There has been more that I’m thankful for this week, but my eyes are getting pretty heavy so I think I’m going to end this entry here.

    We live in a world of darkness and pain and stress. But if we look around we can find the tiniest sliver of hope and encouragement. Even from the couch.

    Cheers!

A Couch With a View: On How It’s a Miracle I Made it to 36……

It was literally the stupidest freak accident ever.

Seriously.

A trickle of water is the reason that I am living on the couch with my foot up for the next week.

Yeah. I told you it was stupid.

But let me rewind. One thing that you need to know is that with my Spina Bifida, one of the symptoms is a lack of feeling in my feet from the top of my toes till about my ankle.

So Monday afternoon I drew myself a bath to get ready to go out. I got in and went to turn the water off. I was in a hurry and didn’t push the knob in all the way, there was a steady small trickle of water coming out of the faucet. I paid it no attention and continued with my bath. It wasn’t until I felt the trickle of water move over my ankle that I realized how hot it had been. So I quickly moved my foot out of the way and turned the faucet completely off.

But the damage had already been done.

I only noticed my skin was red, so I thought that was the extent. It wasn’t until I got out of the bathtub and dried off that I saw the blisters forming. I texted pictures of it to our doctor friend and she told me how to proceed. I soaked it in cool water and didn’t cover it with a bandage till I was ready to head out the door.

As the evening progressed, the blisters started to swell. The next day I was told I’d need to keep it wrapped for a week and elevated, which means I can’t wear shoes. And will be confined to the couch till Tuesday.

Tuesday.ย 

That’s 5 more days. Which doesn’t seem like a super long time and with the stress of life lately, that seems like it would be pretty relaxing. But I’m beginning to get bored. There is only so many episodes of Cheers and CSI that I can take before my brain starts to turn to mush.

Not to mention we have two cats that fight like, well, cats.

And so I sit and write my blog. Pondering how miraculous it truly is that I managed to make it to age 36 with pretty minimal damage.

“There but for the Grace of God go I” (John Bradford)

Photo on 2016-07-26 at 20.36

My view from the couch for the next week. But isn’t Riley adorable? ๐Ÿ˜€

The Moment I Realized I’m Disabled……

Before we get into our topic of the day, I need to offer a caveat: The following entry is based solely on my experience and does not reflect the entire disabled population as a whole. I offer these insights in hopes of helping others that are going through a tough time that can be jarring and very confusing.



I didn’t realize I was disabled until I was 16 years old. Seriously.

The fact that I was born with Spina-Bifida makes that last statement seem completely illogical.

But it’s true. Let me explain.

I grew up the youngest of 3 in the late ’70s in a small town in the Midwest. Being that my sisters were both completely able-bodied and our town was small, I was normally the only person in a wheelchair and braces around. When I was really little I was able to get around with just braces.

My parents worked hard to treat me just like my other siblings. I had chores around the house and would get in trouble if my assigned tasks weren’t done.

In school I was mainstreamed into a regular classroom, and taken out only for short times for physical and occupational therapy. Those were the only times I was treated different from my classmates. I was also the only disabled student in my kindergarten, elementary and middle school.

It’s a funny thing; being a kid. You don’t think much about the future. And when you do, sometimes elements of the life you have are different in the future imagined.

And so it wasn’t until I was 16 and in high school that I had the realization that I had a disability. And there was nothing I could do to ever change that.

Whoa. Heavy stuff.

There was definitely an exact moment this hit me. And it felt like a ton of bricks (I know this is a over-used colloquialism, but in this case it’s the truth). So how did I get through this and come out stronger on the other side? I’m glad you asked:

1. Know that verbally saying it aloud helps you to accept it. Writing it down in a journal can also be cathartic.

2. Seek professional help-This was the best thing that I was able to do with the help of my parents. It was also during this time that we discovered I had been living with a chemical imbalance, causing depression, for a long time prior to this experience.

There is no shame in seeking outside help.

3. To your parents-listen to your child. It may seem strange that they are just now coming to terms with reality, but hearing their words and validating their feelings will go a long way towards healing.

4. Take a day-Again, this realization can be quite jarring. Taking a day to reflect and get your head together might be a helpful technique. I know for myself that taking a day off school helped me to focus and get my head back together.

You can and will get through this. And come out stronger on the other side.

I’m pulling for you โค

 

Snark, Trudeau and the Truth Behind Inspirational Photos…..

Warning: I am feeling particularly snarky today, but decided to blog anyway because sometimes extra snark actually produces brilliance.

I think I read that on a cereal box one time.

Before we get to our topic of the day, here is one giant flaming thing to consider if you ever decide to post an “opinion” on the internet. Now, before I say this, let me clarify that I am a proponent of free speech…..

That said, if your “factually logical” arguments in regards to anything, but specifically the Target debacle, contain holes that I could in theory drive the Starship Enterprise through, I will have no other choice but to call you out. I’m looking at you, Matt Walsh (PS-By the way, you may want to get that thing in your eye checked out and possibly removed. It looks painful).


Now that we have the political rant out of the way, let’s move on….TO CANADA!

Specifically where this photo was captured. (Ok, I can’t just embed the photo, so here is the accompanying article from the Huffington Post):

http://www.huffingtonpost.ca/2014/04/16/justin-trudeau-wheelchair-stairs-montreal-metro_n_5159721.html

For those that want to save the click, the photo shows Canadian Prime Minister Justin Trudeau helping to carry a man in a wheelchair down a broken escalator in a Montreal Metro station.

I originally saw this photo on a page I’m subscribed to on Facebook. Along with this photo on the page were comments such as: “Trudeau is SO dreamy,” “Look at him being such a help. This is great!” (Blogger’s Note: The preceeding comments were heavily paraphrased and do not reflect a word-for-word transcription of the actual comments, although the comments shown here accurately reflect the spirit of the actual comments contained in the original piece.)

Not to completely plow over your feelings of “Yay! We helped” but as I look at this photo, all I can think about as a disabled woman who uses a chair is:

1. Where is the elevator and why wasn’t he using it?

2. Was carrying him down the stairs the only option (why no elevator?) and if that was the case, that is unacceptable.

3. Did the disabled man want to be photographed being helped? And…

4. How did the disabled person feel about getting this help? There have been times honestly when I’ve been helped in this way and on the outside I have been polite and thanked those that helped, but on the inside I’ve wondered “Why haven’t they gotten whatever fixed” Or why didn’t they have an elevator? I do try to be understanding, but there are times that my patience has worn thin.

I remember our Senior Trip (ironically to Canada) and we went to a Broadway-type show. Our tickets had been purchased way before, and when we got there we discovered that our seats were in the balcony, and THEY DIDN’T HAVE AN ELEVATOR!! They did offer to help lift my chair up the stairs……But I just kept thinking, “WHY don’t you have an elevator? Seriously!” I refused their offer to lift me up the stairs because the staircase was winding and I didn’t feel particularly safe with that approach.

Fortunately it was a lighter attended show, so they had seats available on the ground floor that I was able to use and enjoy the show.

So the next time you see a photo of someone helping a person in a wheelchair, after regarding that the person did a good thing, think about why it happened in the first place and maybe brainstorm a few ways to really fix the situation.

Cheers!

To the Woman That’s Gone Through Her 3rd Change of Clothes for the Day…..

Good Tuesday to you all!! While both our girls are sleeping soundly, let’s get into the topic of the day!

Do you guys remember when I wrote that piece to the girl with Spina Bifida? Remember how I had said that was the most vulnerable I’d been on my blog? Well, after letting this one sit in my head for a month or so, I think it’s time to release it. Today’s blog will be the most vulnerable I’ve ever been, but I’m writing it in hopes of helping others dealing with the same thing. So, here it goes…..

My disability has changed my body in several ways over the years. I’m not able to move around as much as I could when I was a kid. I use my wheelchair more frequently now. My bladder has also changed. This has been one of the most frustrating changes.

As women age, their menstrual cycles sometimes shift to a heavier flow or more painful cramps. For me this change manifested itself by making my bladder gush forth several times a day during my cycle. This has gone on for many years. One benefit of this is that it is so consistent that I know my period will begin shortly after this occurs. But it makes it no less frustrating.

See, on the worst days of this, I end up changing clothes at least twice. Usually more. Any liquid that I consume races right through me. It gets to the point where I just sit at home, trying to keep my mind off things. I don’t drink much liquid on these days for fear of changing clothes again. I pretty much live in the bathroom on these days.

I have taken medication to fight off these bladder spasms. It worked well for years, but then my insurance company quit covering it and I had to switch to a new one. This new one works pretty well, but is not as long lasting as the first. And when I’m in the throes of a long day of changing clothes constantly, I can get so into my head that I forget to take it. (In Real Time: Can you believe just sitting here writing this I had a pretty sizable spasm? Calm down, bladder! ๐Ÿ˜› )

On these days, I’m reminded why we (my husband and I) were chosen to remain childless. There is no way I’d be able to take care of myself and a child on these days.

So dear female, I know you are tired and frustrated from constantly visiting the bathroom and changing into yet another pair of clothes. I know you feel unattractive and less of a woman simply because your bladder doesn’t work the way it should. But here are truths you need to hang on to:

1. You are attractive

2. You are worthy of love

3. At least you have clean laundry ๐Ÿ˜‰

4. This too shall pass

If you are currently going through endless bladder spasms and mountains of laundry, you are certainly not alone. I’m rooting for you.

Cheers!

Embarrassed spider image courtesy of cartoonstock.com