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Accepting What You Grow Up With

When I was young, no one in my immediate family had any type of visible disability.  I grew up in the “country” and all the adults and children were physically active and spent a lot of time in physical labor.  I remember helping my parents build the homes of other family members. By the time I was twelve I had helped lay cinder block, shingle a roof, painted walls, hammered nails, dug in gardens, cleared land, etc.
My story was typical of the experiences of others in our community (we didn’t have neighborhoods per se because most houses had at least a few acres around them so all our neighbors were further away than a stone’s throw).  I knew or was related to almost everyone for miles. There were a few people I knew who had disabilities, but not many. I had a great-uncle with no arms. There was a family that lived next door to my cousins where the parents could not hear but their child could.  I also had a third cousin who was paralyzed from the waist down and who was married to someone who had survived polio and walked with leg braces. Other than that, I can’t say that I was aware of disabilities at a young age.
I remember as a child being very curious about how to talk to Mamie Lee and Tommy who were both deaf when they first moved in beside my aunt and uncle.  My cousins knew some of the sign language they used because they were related to them on their father’s side. I remember trying to learn some of the signs because I thought it was a neat way to talk.  They seemed to understand what we said, but I couldn’t understand them as well.  They were good at pantomime though so it was no big deal to get a message across. I didn’t really consider them disabled; just different. Though they couldn’t hear, as a kid I sort of liked that about them because it put us kids at an advantage–we could be as loud as we wanted when we were at their house and not get yelled at; plus we could sneak into rooms which were off-limits usually (though Mamie Lee was amazing at seeming to know what we were up to anyway).
I also remember being curious about my third-cousin, Glenn.  He was paralyzed due to a car accident.  I would watch in fascination as he would drive his own car and then, by himself, remove his wheelchair from behind his front seat and transfer himself into it.  Though he had no use of his legs, he was very able-bodied.  He was a watch repairman and an awesome banjo picker.  He seemed to get around as well as anyone and seemed happy most of the time. His disability; however, being visible was more obvious and the need for us to help him when he visited was apparent.  For example, when he visited, we either all stayed in the yard to visit or Dad put up planks so he could be rolled into the house.
Then there was Uncle Grover… a truly amazing man.  He was an excellent plumber.  He loved to fish, grow his own garden, drive a stick-shift truck, and knew how to do just about anything.  He also had no arms.  One was lost in a hunting accident and one got catch under a mill-wheel and was ground off.  I never thought of him as disabled either; only amazing to watch how he was able to do things with his stubs. I do admit though sneaking sly glances at his stumps and wondering about them.  He caught me looking once and took the time to show them to me and answer my questions about them.
I’m sure there were others who had physical limitations and some that I knew about but just didn’t see as often so they did not make an impression. I heard about a distant cousin with MS but never saw him.  We had a few relatives with dementia; one with schizophrenia, I believe, based on what I now know about the condition.  My point in this “memory lane” experience is that maybe I don’t remember them as being disabled because we only see someone as disabled when they are not part of our lives.  If we grow up around someone with a disability, then they just have a different “normal.” The need to accommodate them becomes an assumed responsibility and we automatically adapt.  We can talk about their situation, ask questions, and learn how to interact with their physical challenges so that it is no longer a mystery that stands out as being different.
You may be wondering why this was on my mind…
I was watching my grandson yesterday around Lynn.  Eli is at the age where he crawls everywhere and now that he’s out of the hospital, his feeding tube has been accepted by him as just another piece of clothing that sometimes gets in his way.  Other than that, he does not pay attention to it.  On the other hand, he is fascinated by his grandpa’s wheelchair and other mechanical devices.  I can put him down anywhere in this house and he makes a beeline to Lynn’s room to see if he’s on his peddlar or foot massager.  Eli loves both (so does Lynn). He also loves to check out the wheels and “drive” the controls on Lynn’s wheelchair (obviously we cut off the power when he does that or else Lynn would likely drive through a wall).
I wonder if Eli will grow up with a different understanding of disability?  Hopefully, he won’t have his feeding tube for many months so that will not be his point of reference; however, seeing his grandfather unable to care for himself and learning that special consideration is needed for him, will that make him view others in their wheelchairs as “normal” like his granddad? I hope so.  I hope that his exposure to caregiving from being around us will make being around others with disabilities something he just accepts as a different normal.  I hope when he looks back on his childhood, as I did above, he will remember the funny stories of meeting the challenges associated with the disabilities and be amazed at how well the disabled adapt to their worlds.  I also hope that he will be able to help others understand wheelchair etiquette and learn to view the surroundings for obstacles that make participation by the disabled a greater challenge…and assist in removing those obstacles.
I fully believe that God puts people and experiences in our lives to prepare us for situations in the future; sometimes to help others but also sometimes to help us.  Eli will have skills for caregiving and compassion that he would not have if his granddad was not in a wheelchair. Perhaps God is using Lynn to show Eli a way of life that He will ask him to incorporate later into one of His missions for him.  It’s a nice way of viewing Lynn’s disability as having a greater purpose for the good of others.

Going Out Isn't Easy

For most people, deciding to go somewhere is simply a matter of making the decision to go and then going.  For people who are mobilized through the power of a wheelchair, that process is a little more complex.
Lynn and I have not been to church since he was hospitalized almost two years ago.  He is now stronger and he is starting to adapt a bit better to the Rebif shots so we are considering trying to make a trip to church.  However, for us, that takes a lot of planning and foresight.
1.  What will he wear?  Lynn currently dresses for comfort and convenience.  Comfort related to the movement of limbs that need to be positioned, careful selection of where seams occur (since sitting on one for long periods when you cannot shift yourself is very uncomfortable), and something that is not binding, scratchy or constricting.  Usually he wears a long sleeve T-shirt and compression shorts with knee-high toe socks.  Not the most fashionable outfit but very comfortable and functional.  The other consideration is the ease for intermittent catheterization or if he’s using an indwelling foley, location of tubing and bag. Since he wears his same outfit to doctor’s appointments as he wears at home, he has not had on a pair of dress paints since PH (pre-hospitalization).  Does he have a pair that fits and could be comfortable for at least three hours?  Would they easily accommodate catheter needs?  That is yet to be determined.
2.  Bladder needs.  If we are making a trip to the store or doctor’s office, I take catheter supplies and cath him discreetly in the van or public restroom (if the location has a unisex and private restroom available.)  If we go to church, that’s an issue. He can’t leave in the middle of a service to be cathed; that would be disruptive.  However, he hates wearing an indwelling catheter in public with a tube leading to a bag of urine.  It’s embarrassing for him and it grosses some people out to see it–plus it makes him appear sick.  He isn’t sick; he’s mobility challenged, so to speak, but otherwise not ill. He doesn’t want those sympathetic, pity-type looks.  He wants to be viewed as whole and functional.  He doesn’t want to be written off as not being able to contribute or considered a subject of pity.  The urine bag represents that for him so it’s a struggle to make the decision to go somewhere like church with an indwelling catheter in place… though practically speaking, it’s the best option.
3.  Accessibility.  Can we get into the building and once inside navigate to where we need to go?  Before going anywhere, I usually like to do a dry run to look to see where the handicap parking is located, do they have ramps, elevators or stairs, etc. You would be surprised at the locations that you cannot access.  For example, we went to a lawyer’s office that had the required slope to the sidewalk so he could get to the front door; however, the slope was at the end of a sidewalk.  The sidewalk ran in from of parked cars.  On one side were cars and bumpers that extended over the sidewalk; on the other side was loose rocks used in landscaping and a significant dip off the sidewalk into the rock.  As he attempted to negotiate the sidewalk and move around the cars extending over the sidewalk into his path, his wheelchair wheels went over the edge and his chair very nearly toppled over into the rock.  I had to go inside and get the lawyer to help me lift him and his chair back onto the sidewalk.  Then we proceeded to the front door which was a good three inches above the sidewalk.  His chair can’t make it inside so we met in our van.  You would think a lawyer’s office would be better equipped. However, we are often surprised at who is not equipped.
Case in point–when we went to the Social Security Disability hearing in downtown Richmond.  I was amazed that there was no disabled parking available except down a step hill.  There was no curb slopping directly in front of the building.  I had to unload him and his wheelchair (that was before we got the wheelchair van and was using a manual chair) into mid-day traffic!  The entrance doors were not automatic and neither were the bathroom doors in the SS office!  Again, you would think a place that caters to the disabled would be better equipped!
Now back to my plan to go to church.  Our church is an old building.  It has an elevator but it’s small.  To get to the sanctuary, you enter the wheelchair into the elevator through a side door, then it goes up one floor, but the exit is at a 90 degree angle to the entrance door.  It’s nearly impossible to maneuver a manual wheelchair with a large man in it into the elevator and out the door one floor up.  There’s no way to get his powerchair in there with him in it due to the leg supports and foot pedals extending too far out.  So if we go to church, we will have to use a transport wheelchair.  The transport wheelchair is not designed to adjust in the ways he needs to remain comfortable sitting for an extended time.  I’ve considered putting him in the manual chair and trying to send the powerchair up without him in it but even with all limb supports tucked in close to the chair, I’m not sure we could maneuver the chair out of the elevator. If he’s uncomfortable, he will not be able to focus on the sermon or enjoy the fellowship so we have to take that into consideration.
4.  Finally, germs.  He’s very susceptible to infection.  He has an autoimmune condition, after all, so his immune system doesn’t function properly.  If he gets a cold, or heaven forbid, the flu or a GI virus, it could put him in the hospital and all he has gained since his last hospitalization could be lost again.  Therefore, once the cold weather sits in and people start spreading those nasty germs again due to being enclosed in crowded places, we will have to avoid public areas. I’ve jokingly told him I would put a plastic suit on him so he could shake hands and hug people but that might not be the most comfortable solution either.
So, we are not decided about going to church tomorrow.  If we can find clothes today, figure out the catheter question and get the backup plan in place for a wheelchair access, we might get there.  It would be nice to hear the choir and fellowship with the congregation.  We miss seeing them and being a part of worship but we are fortunate that if we can’t work out the process, we have the sermons online to fall back on.  Keep your fingers crossed that we will make it in!