A Wheelchair Doesn’t Disable Your Heart

In all the chaos and hurry of trying to get everything cleaned up on my desk and in my inbox, I was stopped in my tracks a couple of days ago.  I was reminded of why I do the “work” I do.

I received a call from a Jane Doe, woman on Pine Ridge Reservation.  Okay, that’s nothing new for me.  I talk to a lot of folks there.  Jane is a woman I have actually visited and with whom I have spoken quite a few times.  She is a pleasant, soft-spoken woman who is  a wheelchair bound paraplegic, the result of being rearended in an auto accident by a drunk driver.

You would think Jane would be worried about herself and the fact that she lives in a small, non-ADA compliant apartment.  But several months ago, she told me the story of her two nieces.

Both her nieces are adults.  Both of them are mentally handicapped.  The two women had lived with and been cared for by their parents until the parents passed away.  At that time, one of their adult siblings was given guardianship over the two women.  The guardian decided to put the two women into a home of some sort, many miles away from the reservation and from all that was familiar to them.  No one from their immediate family visited them and, in fact, the guardian moved away to the East Coast and left them alone.

Jane Doe was the only one who visited her nieces, in spite of the fact that her car was constantly breaking down.  The women cried when she left and called her crying when she was at home because they were so lonely.

Jane, though disabled herself, was so concerned about her nieces that she went to the tribal court and sought guardianship of the two women.  They have been allowed to come to visit her — sleeping on the floor of her living room on top of sleeping bags and quilts.

Jane recently received guardianship!  However, they cannot come to stay with her permanently until she has a place for them to sleep that is not the floor. 

The living room is the only place in the apartment that they can stay.  Truly, Jane and her nieces need a proper place to live — one where a wheelchair will fit through the doorways.  But that is not likely to occur any time soon.

Jane would like to have her nieces home by the holidays, she told me when she called to ask if I could help her find a pull-out sofa bed or bunk beds for her nieces.  It’s so hard to say no to someone as generous and kind-hearted as Jane.  But it isn’t what we usually do, since a sofa bed, the best option, can be quite expensive.  I, personally, would hate to ask 38 and 40 year old women to be climbing into bunk beds, however.

We have actually located a sofa bed for $1000 that can be delivered to their home.  I’m not sure if that included tax — probably not, right?  But we don’t have a spare $1000 at this time.

I’m hoping that there will be a donor (or donors) who thinks that these 2 mentally handicapped women deserve to live with their aunt, who is so loving and giving in spite of her own needs.

If you know anyone who would like to help, direct them to ONE Spirit at http://nativeprogress.org to make the donation.

I, personally, am going to keep Jane Doe in my mind as I prepare for the holidays of giving thanks and giving gifts.  She is willing to give of what little she has out of love for her family.  She is a true inspiration to me!

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Pine Ridge Frustrations!

I thought yesterday I had a great new story about a Lakota woman who had some real dreams that were being hindered by life on the rez.  That was before today’s phone call from a sponsor who had distressing news from the elder she sponsors.  Now I had another story line.  What should I do?  Write 2 stories or try to combine them?

One the surface, it didn’t seem as though these stories had a lot in common.  But I never just stay on the surface, I guess.  The more I thought about the 2 women, the more I realized that both these women were being frustrated and stressed by the conditions on Pine Ridge.  In the words of the Law and Order narrator, “These are their stories . . .”

Story 1

Woman #1 is in her early 50’s.  She has been wheelchair bound about 15 years as a result of an auto accident – she was rear-ended by a drunk driver.  I have written about her before, describing the small, non-accessible apartment she lives in.

Yesterday, when I spoke to her, she told me about a house she yearns to have.  She wasn’t asking me for it.  She was just expressing a yearning for a home.  It already has a ramp entry and everything.  She has been making the rounds of the tribal offices involved, trying to find out what she needs to do to be eligible to the house.  She also told me the story of why it is so important to her to have that house – or one like it.  At the very least she needs something bigger than the apartment she is in.

She told me about her 2 cousins who are in their 30’s.  They are sisters who used to live with their parents.  They are also mentally challenged.

When they were young, they were in the “special education” classes at school.  They were mocked and called “retarded” by the other kids at the school.  Rez schools are small and they could not seem to avoid it.  They transferred to another school.  It was further away from their home in a different rez settlement, but they did not endure the same taunting and bullying there.  After their schooling was complete, they lived with their parents.  They helped with the daily chores and were capable of taking care of their own personal care.

Their mother died first and more recently, their father died as well.  The only family they had left were an older brother and sister.  The brother did not have much to do with the family.  The older sister was appointed guardian of the 2 handicapped girls.  She went to court to have them placed in a home with the stipulation that they must be kept together.  Then their sister moved away from the reservation.

The 2 handicapped sisters were placed in a kind of group home — in Hot Springs, SD (over 60 miles & one hour away), not on the reservation they had known all their lives.  They are the only Native American women at the home.  There is one Native American man who is much older than they are.  They are very unhappy to be so far from home and from anyone they know.

The woman I spoke to on the phone would like to have her cousins come live with her.  She is the only one who has visited them (a difficult trip for this paraplegic woman).  She has arranged with the court to have them visit with her for a couple of weekends, especially for the 4th of July fireworks.  The court has said it would give her custody if she had room for them to live.

And so we are back to the house this wheelchair bound, paraplegic woman desires so much.  It isn’t just that, as she said, “I’m 50 years old and want a place of my own.”  It is that she needs the extra room so that she can bring her 2 handicapped cousins back to the reservation, the only home they know, to live with her.  Officials have already told her it cannot be done while she is in the small apartment that barely accommodates her and her wheelchair.

She told me that she watches “that show with Ty Pennington” and thinks, “Hey Ty, I need your help.  Can you come to the rez and help me?”  She said she cries right along with the families that get the new homes because she knows how much it means to them.

She is a sweet, gentle woman with a lot of love to share.  I do not know how to find her a new home.  I usually deal with the smaller things, like toilet paper and school supplies.  So I will leave it to you, readers, if you know of any resources that can help this woman.

Story 2

Late in the afternoon I got a call from a sponsor.  She had just been speaking with one of the two elders she sponsored.  The elder was very upset because she was basically being evicted.

Apparently one of this elder’s teenaged daughters is acting out and getting into trouble.  The landlord, who is somehow related to the elder, “doesn’t want any trouble,” so he told the elder that she and her daughters had to leave.

I’ve written about this woman before as well, in fact quite recently after we visited her on our trip to the rez in June (the second story in “Two Amazing Lakota Women 6-24-11).  I had written about the crushing poverty I had found at her home.  Now she was to lose even that.  She had called the sponsor, crying, with nowhere to go.  She needed a home.

She told the sponsor that she would be forced to move to a shelter in Rapid City since she had no one on the rez who could take her in.  I thought of this woman whose health is so fragile, who depends on oxygen tanks for life, and I wondered how she would survive in a shelter.  What would her daughters do?  Would they take care of their mother or set out on their own and leave her alone in the world?

I do not have any way to get housing for people on the reservation.  There is a severe housing shortage.  The tribe needs thousands more homes if everyone who needs one were to have one.  I will make some calls to find out what is available to assist this woman.

My title with ONE Spirit is “Area Service Coordinator.”  But it means that I try to match people on the rez with the services that we, as an organization, supply — OKINI, food, wood, sponsors.  I am not intended to be a social worker for the two areas I serve.  I do sometimes feel like one.

Sometimes, all I feel is frustrated.

Frustrated that I am not aware of all the services and programs available to individuals on Pine Ridge Reservation.

Frustrated that the Oglala Sioux Tribe (OST) does not have the means to meet the needs of the Oyate (their people) and does not appear to manage what they do have well.

Frustrated that the OST does not have a better way to communicate with the people about resources that are available to them.

Frustrated that a culture which values family, which considers women and children sacred, doesn’t have ways to assist those very groups in their dire need.

As I always say, I don’t have the answers, just the questions.

Right now, I also have a lot of frustration that I would be happy to share.

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A Tale of Two Wheelchairs

Actually, I guess it ought to be three wheelchairs, since I now know three women on Pine Ridge Reservation who require wheelchairs to move around.  There are many more but I am not personally acquainted with them.  But I know two different “types” of wheelchair-bound women.

Wheelchair 1

When we returned home from our trip to the reservation earlier this month, I had a phone message waiting for me from one of the women to whom I refer.  When I had spoken with her a month or so earlier than the trip, all was well — and she did not have to rely on a wheelchair to get around at that time.

This woman is a grandmother who cares for a teenaged granddaughter (who has a serious chronic illness) and a grandson.  She lives in a home with her spouse, an adult daughter, several other grandchildren and an adult son.  But she is definitely “in charge.”  She is the glue that holds the family together, as one of the children’s sponsors told me.

I returned her call and asked how she was.  “Pretty good now that I’m home from the hospital,” was her reply.

The hospital?  She had been unexpectedly hospitalized because of gangrene in her foot, a complication of her diabetes.  It has just been a toe that looked “a little dark” when she went to the doctor.  But it was more than that, apparently.  They brought a helicopter in to fly her to Rapid City Regional Hospital, where she spent the next two weeks.  During that time she had a leg amputated and got her wheelchair.

When she was leaving the hospital, they gave her a narrower wheelchair which she tells me fits through the doorways in her home.  Since she already had significant arthritis, they had already added a ramp to her home in the years before.  If she needed any further accommodations made to help her mobility, I had no doubt that this feisty Lakota grandmother would ask for them.

We spoke about the adjustment from two legs to the chair.  She told me that she is not “happy” about the change, that it can be frustrating at times but that she would manage.  She laughed when she told me about the groups that have been calling her with “support” for the depression she must have.  She told them she wasn’t depressed, but that she would contact them if she needed them.  She won’t, I’m sure.  She’ll “manage.”

The real reason for her call?  Not her own woes — at least, not directly.  She had heard from her long time sponsor who had told her she would only be able to sponsor her until the fall.  The sponsor, who had major heart surgery just a couple of years ago, was now fighting a battle with cancer.  She was worried about her.  Oh yes, and could I start looking for a new sponsor for her so she would have one when this sponsor stopped in the fall?

I wonder if need always trumps concern.  Probably.

The second woman is also a grandmother and diabetes was also the cause of her need for the wheelchair.  The first time I spoke to her she told me that she liked to sew and read.

We visited her on one of our early visits to the rez.  At that time she was living in an old FEMA trailer.  There was no room to get around in the wheelchair, with the worn, overstuffed furniture she had in the trailer.  There were no closets to speak of, so clothing and other items were stacked and strewn throughout the trailer.  She had adult nephews who were there at the time but did not seem the least interested in helping her get around in the cramped space with the wheelchair.

Now she lives in slightly better “digs” for a rather sad reason.  Her adult daughter, who has four children, was sent to jail.  I don’t know the reason and I did not pry.  The children needed someone to care for them while mom is away.  So this grandmother moved into her daughter’s small house to care for the young grandchildren.  It is now a bit easier for her to get around.  But she is not the type to ask for anything for herself and so she is not likely to have a truly accessible home.

Wheelchair 2

The third woman in the wheelchair is very different from the two grandmothers.  She is younger.  She is not in her wheelchair due to complications of diabetes.

It was about 15 years ago that this woman was in a car that was rear ended by a drunk driver.  I’ve written about her before.  She was paralyzed from the waist down and has been in her wheelchair ever since.  We first met her in her apartment, which is incredibly small.  The kitchen fits a small kitchen table and her chair with little room to walk around it.

The last time I spoke to her, she related that she has never been able to use her bathroom.  She cannot get into it with the wheelchair.  She must do all her bathing and toileting in her bedroom.  Of course, the bedroom is not much larger than her mattress, so it is difficult.

It saddened me to think of living like that.

It is very difficult to be handicapped on the reservation.  Most of the living accommodations would not “pass” ADA muster.  There are many unpaved surfaces.

Yet there are many handicapped persons on the reservation, diabetes probably being chief among the causes.  How do I know this?  One of the things I noticed on my last visit was how many homes have ramps to the front doors.  I guess it’s good that the handicapped person can enter his or her home, even if they can’t get around in it very easily.

I have yet to see anyone with an electric wheelchair, though I am certain there are some who would benefit from that convenience.  Especially someone like the last woman I wrote about, who has had to be in the chair for so long already.

I was in a wheelchair once, for six weeks.  I am unable to use crutches due to my fibromyalgia and I broke an ankle that required surgery.  I had to use a wheelchair.  Even in my 5 room ranch it was not easy getting through doors.  It was not easy getting in and out of buildings.  The toughest task was getting up a ramp in an arena when I attended a hockey game one time.  Obviously my husband wasn’t going to push me into the Ladies’ Room.  So I was trying to push myself up the ramp which was steep enough to make me struggle.  Thank goodness it was “Girl Scout Night” and a few scouts came along to assist!  They truly did a good deed!!

So who does good deeds for the folks on the rez?

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