Disability Privilege

As I grow in my understanding of urban ministry I have had to wrestle with the phrase “white privilege.”  As I’ve thought about that concept, I came to realize that Jerry and I live with “Disability Privilege.”

Friends, or those we meet, often comment on how much we are “on the go.”   The unspoken remainder of the sentence is “especially for someone with disability.”  Though some courageous commenters will ask “how do you do it?  Can you get an wheelchair on a train/plane or whatever means of conveyance we are awaiting?”

I don’t typically think about what we do as anything special or unusual, it’s just our life.  We travel several times a year for the ministry, both within our region and across the country.  We try to get away a couple of times a year for some vacation or rest time – we’ve spent that time driving around the US, relaxing at the beach, visiting family, hosting family, cruising to Alaska and some points in the Caribbean (different trips – ha!).  And we make sure we get to a number of baseball games each year and other local events.

We have a number of  friends who live life affected by disability and travel even more extensively, but honestly, we are part of a very small group.  The larger number of people affected by disability in this world struggle to get an appropriate wheelchair, support services, housing they can afford and maintain, reliable attendant care or transportation so they can secure a job.

Even on our worst days about 90% of people with disabilities around the world would love to have the “privilege” of working through our challenges.  It’s good for me to be reminded that we are blessed beyond measure.  Not because of anything about who we are, but because of the graciousness of our God.  It doesn’t even mean God loves us more than those who struggle – He doesn’t.  What it does mean is that we have the opportunity to use the blessings God has given us to bless others.  That is a fun and exciting challenge in which to participate.

To Whom Much is Given, Much is Required.  Luke 12:48

 

Manufacturers Instructions

We have an electric bed that allows Jerry to change position easier.  Two weeks ago my side of then bed got caught under the headboard and broke.  Some bolts popped and broke and it seemed the motor burned out.  I went several days thinking I didn’t need to fi it, I can sleep flat.

After a few days though, I had to admit I was spoiled and needed to do something about the bed.  I stopped at the store to inquire about purchasing a new base.  The salesman was very helpful and told me the price of a new base.  He also suggested I call the manufacturer as they are excellent at helping with part replacement.

He was right; I had dealt with this manufacturer before and this call was no exception.  The lady on the phone listened to me and then listened to the noise the bed made and diagnosed the parts that needed to be replaced (at about one fifth the price of a new base), which was slightly different than what I thought I needed.

Today my niece Susanna and I tackled the repair.  The very first instruction did’t make sense to us and we could not find a diagram to show us what to do.  We decided that it wasn’t that critical, so we skipped it!  Bed underneath

We moved on to replacing the “brain” and then the head motor.  We plugged it back in, retrained the remote and tried the bed.  Both the head and foot raised, and lowered. They didn’t raise as high as I thought they should, but I figured I just didn’t recall properly.

A short time later (after everyone left) I was resetting our room.  When I tried the bed remote it did not work again.  Seriously!!??

So once again I flipped the bed over, and looked to see if I could find the problem.  Suddenly I saw it – the part we were supposed to do first of all but had skipped.  Of course to fix that now I had to remove the parts we had just replaced.

Doing it alone was hard, and several times I felt tested beyond my capabilities.  But perseverance won and finally I got it together and working properly.

Yes, it does feel like an accomplishment I am proud to have made.  But the lessons were not lost on me in the process . . .

  • I thought I knew what part needed to be replaced and called to order that.  The manufacturer could tell from the sound and my description which parts I really needed.How many times do I think I know what I need to deal with in my life, but as I spend time with my manufacturer He points out the real issue.
  • When we couldn’t figure out the first instruction we skipped it.  Turns out it really was important.  How often do I try to skip to the “easier parts “of following Jesus only to find following Jesus requires full obedience – there are no short cuts!

What do you know . . . the Manufacturer really does know best!

bed up

Riches in Secret Places (part 2 of 2)

 

If you missed part one of this story you can read it here.  It sets the stage for what follows.

A little after 6:30 the phone rang, it was Jerry’s cell.  I answered “What’s wrong?”  He said, “I am coming home, I have a wheelchair problem and need your help.”

A few minutes later he pulled in the driveway.  The cord that supplies the connection between his wheelchair motors and joystick came apart.  This had happened a few times recently, in fact a new wire was recently ordered.   Today when Jerry tried to plug it back in while sitting in the van in the restaurant parking lot there was a spark.  This is NOT GOOD when he is still sitting in the chair and has no way to get out of the van.

I realized that I would need more light and space to maneuver than I had in the van if I had any hope of fixing this.  Now imagine getting 500 pounds plus of stationary wheelchair and husband out of a full size van under just “wife power.”  I tugged and pulled and grunted, trying to balance the need to use enough force to pull him over the hump and onto the van lift, without so much force that I’d loose my balance and topple over, or more likely plop off the lift.

Jerry on lift

Mission accomplished, now to push him up the ramp, in the door, and to the room where I could transfer him out of the chair so I could safely try to fix the chair without endangering him.  After about 15 minutes it became clear that the spark in the parking lot did more damage and this was not going to simply be a “reconnect the parts” type of job.  We deemed the chair temporarily out of service and I trudged to the garage to get his old back up chair.

I got to the garage only to find a problem there; the large power door would not raise to get the other chair out.  Thankfully adjusting the door sensors was a simple and easy fix I could do.  As I took the old chair to the house I realized that I was now at least 15 minutes behind schedule, MY schedule, for getting to the Y.  Thinking I may have to let that part of the schedule go, I consoled myself with the thought that since Jerry was already up early to go out to breakfast, maybe he would take me to breakfast instead!

At about 7:15 just as I am about to help Jerry into this chair he said, “I don’t think it’s worth going back to the breakfast.  I think I’ll nap for  half an hour before I go to the office.”

How do I respond?  I really wanted a reward for all I had done, and thought that going out to breakfast together was a great plan.  But I also thought about how worn down Jerry’s body was and how early he had gotten up.  After a short debate in my head I replied “Ok” and he shut his eyes and was immediately asleep.

Gathering my wits about me, I headed to the kitchen to make my breakfast and have that quiet time I planned on an hour ago;  all the while muttering to myself, “my life is not my own!”  This is not the first time I’ve uttered those words.  Nor is it the first time I’ve heard the still small voice of God respond with “And the problem with that is? “    Consistent, isn’t He?

And then God reminds me . . . what is it I want my life to be about?  In high school I once had an assignment to write my epitaph.  I wrote “A woman who loved and served God by loving and serving others.”

“So my daughter,” God gently asked, “isn’t that what you are doing?”  He makes a good point!

Could I trust God enough that if I do what He is calling me to do now in this moment, perhaps He could help me find another opportunity to swim?  Would it not follow that if I were truly loving and serving God by loving and serving others that my life would not be my own?  In fact the Bible tells me that I am not my own but have been bought with a price (I Cor 6:19-20).  So yes Lord, my life is not my own, and that’s a good thing.

Nap well sweetheart!  And Lord let me again rest in the assurance that You have bought me and I am Yours.  Thank you for the riches you have stored for me in secret places, that lead me to You.

Riches in Secret Places (part 1 of 2)

This was first printed in a book entitled Hope published by Calvary Church Souderton, PA in 2012.  It is edited and reprinted here with permission.

Having worked with people with disabilities for most of my career, and now being married 16 years to Jerry (who was born with cerebral palsy and uses a power wheelchair) one might think that I have a handle on what it’s like to live with disability in the family.  Some days I do, but surprises pop up in the most unexpected ways.

Early on one of those surprises was the pace of life – it became so much slower!  Things I was able to do in a matter of minutes before could now take closer to an hour; there was no such thing as quick!  Just to load in and out of the van adds 15 minutes to anything we do!  Spontaneity is really not in our vocabulary.   Yet even as the pace of life became slower; the demands on my time and life increased significantly.  Essentially I have more things to do in less time.  Slower and fuller – what a combination!  Disability has been described as a part time job; and sometimes it feels like a job without benefits . . .

But there are benefits, and one of my favorite passages about those benefits is in the Old Testament in the book of Isaiah.   Cyrus is the man God has appointed (though Cyrus hasn’t acknowledged God’s role in his life) to lead the children of Israel out of captivity.

Isaiah 45:2-3    I will go before you and will level the mountains I will break down gates of bronze and cut through bars of iron. (My note – how’s that for making things accessible!)   I will give you the treasures of darkness, riches stored in secret places, so that you may know that I am the Lord, the God of Israel, who summons you by name.

Treasures of darkness, riches stored in secret places.  I think it is safe to say that if someone (especially the God of the Universe) offered treasures and riches to us we’d love to accept if there were no strings attached; but there are some strings attached, so to Metal Doorspeak.  Isaiah tells us those blessings are found in darkness and secret places.  Not usually places we willingly go – especially if the path is not well marked or heavily traveled.

 

I am not saying life affected by disability is all darkness, but there are some tough times; and it’s ok to admit that.  There are things that just don’t make sense, yet because God is there and He is the one making the way before us, we know the adventure is not in vain.  Don’t miss the last part of verse 3 – God says He give us these treasures and riches in darkness and secret so that we may know that He is God and He is personally and intimately involved in our lives (summoning us by name) whether we are ready to acknowledge that or not.

Can I tell you about one of those days in my life?  I had a plan, my plan.  I had gotten Jerry up early (which means I was up even earlier); at 4:00 am to be exact, for a 6:30 am breakfast meeting. Once he was out the door at 6:00 I laid back down for 30 more minutes before getting up to have a quiet time and head to the Y.  It seemed like a good idea to me, and one that would surely honor God because it included taking care of me both physically and spiritually. . .

Check back here tomorrow for the conclusion.

 

Feel Good Stories Don’t Always Work for Me!

Ok, I may have to stop driving and listening to news, even the “feel good human interest” news stories. In fact, two of those that I’ve heard in the last week had me driving down the road shouting, “NO, NO, NO, NO!”

The first was a news story that a clerk in a chain pharmacy was found helping a customer who was blind do his shopping. Really? That’s news? Now don’t get me wrong, I have no problem with what this employee did. But is that seriously deserving of a news story? Have we as a society really sunk so low that someone who is paid to do customer service, and actually does that, is a hero worthy of a national news report?

The second story came this morning, and rose my ire even more. The audio portion of a video that has gone viral was played on the radio. Apparently in this clip a girl who was identified as a cheerleader and very beautiful took a large cookie to a student with autism and on the cookie it was written, “Will you go to the Prom with me?” One can hear the excitement in the young man’s voice as he read the message and responded with a jubilant “YES!”. The radio host went on to ask what was it about a girl who is so beautiful and had so much going for her that made her want to ask a student with special needs to be her date?

I almost had to pull over to vent without hitting anyone!

Prom Dates
 

Me and my favorite (and only) Prom Date!

 

Why do we have to emphasize the difference between the two students – and that one is beautiful and has it all together (or so it looks) and the other who has more obvious needs. Is it so impossible to think that perhaps this girl has a heart and has actually developed a friendship with this male student? Might she enjoy spending time with him? Maybe I am just brain washed from being married twenty plus years to someone who would be considered a “special needs student” in today’s systems. And I am proud to say some of the people I most have enjoyed spending time with through my life are friends who the world labels as “Special Needs.”
Yes, there is also the another possible side to this story. A mom of a student with special needs called in to the station and noted the rise in these types of stories and how they go viral so quickly. In her experience (a separate story) the typical girl who invited her son’s friend with special needs to the prom did it to achieve her 15 minute of fame – and then abandoned her “date” at the Prom. Oh may it not be so.

I appreciate that there are more news stories that paint people affected by disabilities and special needs in a positive light. I pray the story I heard this morning is legitimate and this girl finds she has the best prom date ever and thoroughly enjoys her time with her friend. Maybe I am just too simplistic, but can’t we all just treat one another with the honor, dignity and respect we each want to receive? Can we drop the labels and build bridges over the chasms of differences?

I know it won’t happen overnight, but maybe if each of us stop to think before forwarding a “heartwarming video or story” we may understand there is more than one side to every story (including the fact that I could be off base on what I share here).

To Roll a Mile In His Seat

I speak fairly regularly on the effect disability has on the entire family.  Having lived and worked with disability in my home for more than 30 years I genuinely felt I had a pretty good understanding of the reality of disability and ambulation.

Then I had foot surgery . . . .

To be fair the Doctor told me in advance that I would need to stay off my foot for two weeks.  I was sure though that I’d be able to go back to work after a coupe of days, after all I have a high pain threshold.

After surgery the Doc told Jerry, “now it’s your turn to try to tie her down the best you can for the next two weeks!”  Thankfully I listened and heard what he said – I can do two weeks now off my foot, and a relatively reasonable extended recovery.  Or I can push it now and then have a long drawn out recovery.

Prior to discharge from the hospital a Physical Therapist gave me a pair of crutches.  It didn’t take more than a few steps to realize they weren’t for me!  So then we tried a walker – still meant I had to hop on one foot only, but at least I had more stability.

The walker got me home (with the help of a friend and the lift on Jerry’s van).  But once I was home I took the seat of honor – one of Jerry’s older power wheelchairs.  Now that was the way to travel and survive this journey!  I could keep my foot highly elevated and still be able to mo

elevated foot
Snuggled in his chair, under his Tiger throw, elevating and icing my foot.

ve through the house.  A few days later a friend lent me a knee walker.  I’v
e been alternating the two throughout the week.

You know, sitting in that chair, even knowing that when absolutely necessary I could stand up for a transfer, gave ma a whole new perspective on my husband.  It’s not as easy as it looks to just manipulate that little joy stick and successfully navigate the corners, halls and doorways of a home. Getting things from the refrigerator take a considerable longer amount of time that I ever thought they “should.”  Shutting the blinds, or putting laundry away – it just doesn’t happen in the same way.  It’s hard to balance a meal you’ve just taken out of the microwave on your lap with one hand while moving the chair with the other hand.

Then add to that fun two wheelchairs, and a Christmas tree and the challenge moves to a whole new level.  If you want to see the fun for yourself you have a week or so left to come view our “dance” in person.

On the flip side Jerry, while not having the option to walk for this week has commented several times about, “Wow, you go through this every time you get a meal out for us?”  And mind you – he is “just’ reheating food that other have graciously brought us!   A quick trip to the grocery store becomes a full evening activity for him.  Taking a couple of hangers of clean laundry to the closet really does take about 10-15 minutes to complete.

Yes, this is just a temporary arrangement in our home and lives, but the eduction and appreciation we have both gained will hopefully impact our lives and appreciation of one another for years to come!  I know the laughter and tears from the memories will be there.

Forget that walking a mile in his shoes – I’ll ride in his old wheels any time!

When the Helper Becomes the One to Help

A year or so ago I took an informal survey among my caregiving friends asking them to complete the sentence, “You know you’re a caregiver when . . . ”  The responses ran the gamut from humorous to painful to thought provoking.  They were also plentiful.  If you’d like to read the compilation of all the responses, click here.

Over the last week I have been thinking about one of those responses, “You know you’re a caregiver when you consider your own hospital admission as a vacation.”  Tomorrow I am scheduled for some routine surgery on my foot.  Recovery will put me out of commission for a couple of weeks, but I am looking forward to the rest.

We’ll be in good shape though. Jerry has an excellent team of friends who will graciously step in and cover for all his attendant care needs.  Work is at a place where I can manage a little more time off and ministry events should not be effected by my recovery.

But then the tricky part for me came – I had to acknowledge that I will need some help.  See, it is much easier to acknowledge that Jepush for helprry (or anyone else for that matter) needs assistance.  I have no problem asking for someone else.  As Jerry and I talked we realized that meal help would be needed.  It was a huge challenge for me to contact our church’s meal ministry and ask for a few meals to be provided for two weeks.  It is hard to go from being the caregiver to the receiver of care!

I thought back to other times I’ve had a medical need and how did we do it then?  I don’t remember doing all this scurrying around to prepare the house, or the need to ask for meals.

That’s when it  me – this is the first time I’ll be “down” for a time since Mom has gone.  Two and a half years later and we are still hitting a new “first.” Once again I am grateful in hindsight for ALL she did for us that I took so much for granted.  I wonder if God can let her know that I realize it now?

Yesterday I had a melt down of worry.  Jerry was a bit under the weather which totally changed all our plans for the day.  I wasn’t ready for that – I had my agenda of what needed to be done, and how I needed him to be ready to take care of me. And just like the caring Daddy He is, God met me right there with Luke 12:22-34.  Worrying won’t help me one bit, and in fact can harm me.  Our Abba Father, Daddy God knows our needs and He is m
eeting them.

In fact, once I pulled myself together and the day moved along I was blessed by so many people offering to help us in so many ways.

I am aso grateful that we are not alone.  We are surrounded by a church and friends and family who will and even want to help us if I’ll just let the stubborn pride drop and be willing to acknowledge I need them.

Hands Help Represents Question Human And Solution