Living Life

Jesus, Me, and the Kitchen Table

Getting Around

It seems that nearly every profession and many causes have a national holiday.  In April we celebrated Teacher Appreciation Week and so far in May we have paid tribute to all those in the nursing field.  But one you may not have heard of for the month of May is National Mobility Awareness.  According to the National Mobility Equipment Dealers Association website, in North America over 18 million people live with restricted mobility.  But you don’t have to be in a wheelchair to have restricted mobility. There are numerous health conditions which can limit one’s mobility such as spinal cord injury, spina bifida, cerebral palsy, and more. People with limited mobility may use wheelchairs, walkers, canes, or crutches to move around.

People with mobility restrictions either cannot walk or can only walk very short distances. They may find it hard to move around in small places, negotiate steps, open doors, carry items (while using mobility devices), reaching things on high shelves, or picking up objects dropped on the floor, balancing, standing or standing for prolonged periods. Weather can be a concern as well.  If it is raining how will one hold an umbrella and push a wheelchair?

Another aspect to think bout is parking spots.  There are two basic kinds of parking spaces reserved for those with restrictive mobility. You have the “Reserved Parking” and “Reserved Parking Van Accessible” handicap parking spaces. The first type is for any vehicle properly displaying a handicap placard or handicap license plates.  The “Van Accessible” spots are for, well, VANS! That’s because these spots are accompanied by a wide set of stripes to the left or right of the space. Those stripes allow a van ramp or a lift to be used.  Drivers should never park on the stripes!  Doing so prevents a person who is in a wheelchair accessible van from entering or exiting their vehicle and readers that parking space useless.

During the month of May the National Mobility Equipment Dealers is giving away several vehicles that are accessible.You can go to their website at http://www.nmeda.org and vote for the candidate of your choice to win one of these vehicles.  These vehicles are not cheap.  If you take the cost of an average new minivan, you are looking at $30-40,000. Add on the modifications and you can easily be looking at an additional $20,000.

As you are out and about and enjoying your mobility this month be aware of those around you who can’t move about as easily. Look for ways that you may can lend a helping hand, but be okay if the person declines the offer. Many times people are grateful for your help and other times they may be able to do it themselves. But don’t be afraid to ask!  Don’t be afraid to talk to a person who is in a wheelchair. Remember that just because someone has physical limitations doesn’t mean they aren’t a genius! Most people with disabilities have the same desires as non disabled persons – just to be accepted and live as normal a life as possible. Many people with mobility restrictions have a job, children, interests and abilities similar or different to those of others. Let’s get moving!

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It’s All About the Stripes

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Once upon a parking lot, there were many cars and trucks,  each one driven by all kinds of people. Each person found a place to park. Well just as there are very unique people driving all kinds of vehicles, there are different kinds of parking spots too. That’s where the stripes come in.

You see, some people have problems walking, others can’t walk at all, others have heart and lung or nerve problems– and much more! But what about the stripes?

Well, all parking spots have stripes. Let’s say you are at a grocery store. You have a handicapped plaquuard because you have back problems.. You pull up into a regular handicapped spot. You’re good! But what is regular? These are the spots with just 2 regular stripes like any other spot, along with the sign that designated it as handicapped parking.

But let’s change it up a bit. Now a person in a wheelchair comes along. Most vans that are wheelchair accessible have a ramp that opens out on the passenger side.that means the only safe and accessible spot is one that has wide stripes out to the side. For these vehicles the stripes need to be on the right of the parking spot. The left side is okay if the spot can be backed into. Sometimes but not always, these spots are designated with a “Van Accessible” sign. If no spot like this is available these people usually have to wait until one is vacated or shop somewhere else. That’s because they can’t even get out of their van and be assured they can get back in.

Yet another kind of spot has narrow stripes to the side. These are for people in walkers. Without these stripes it is hard for these people to get in and out of their car.

Sometimes people use a family member’s parking plaquuard and park in these spots. The other day I was at CVS and came out to leave. A man was using the RedBox DVDS rental kiosk. He had pulled crookedly into a handicapped spot because it was right next to the kiosk. It wasn’t raining or cold. So as I was leaving he got in his car and started backing up. I had to honk to avoid him hitting me.

As a wheelchair user I will even park in a regular parking spot if there is one on the end of a row with stripes to the right.

So once again, parking is about the stripes. And if everyone pays attention and is honest, maybe more people can find just the right spot.

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My Robot Experience

When I first realized I wasn’t going to be able to attend a required meeting with some of my most favorite colleagues, I was a little bummed to say the least.  So much I would miss out on… seeing all my friends and colleagues in the field of visual impairment across the state, the new facility for Region 11 Education Service Center which is where the meeting was being held, and most importantly – the critical updates and knowledge in our field.

I let the person in charge of the meeting know that I couldn’t attend, but asked if I could possibly join in by conference call or Skype.  I’ve never used Skype so I was a little skeptical about that option.  And calls are okay, but you can’t see what’s going on — and I’m a very visual learner.

Some time went by and then I got some very good news.  The lady in charge has a son who has been fighting cancer for a little while now.  He’s in high school and during his treatments at M.D. Anderson, many miles from his home, he attended his classes with the assistance of a VGO robot.  So yes, you’ve guessed it!  Things were arranged for me to use the same kind of robot to attend this meeting!

Once an administrator set up my account and gave me a username and password, I downloaded the VGO app. It works on a laptop PC or MAC or even on an iPad.  Once logged in I just clicked on my robot’s name, REATA 3, and it connected a video call.  So the VGO was in Fort Worth and I was at my office three hours away.  I could see the room and everyone in it.  I could hear them – all of them.  The main speaker used a microphone, but I could hear everyone talking, even if they didn’t have a mic.  They could also see my face on the screen of the robot and hear my voice.  But that is not all. Using the mouse or the arrow keys I could make REATA 3 roll around. How cool is that?!

In the meeting our first assignment was to find 3 people at the meeting we did not know, then 3 people who work at Region 11 whom we did not know, and then locate 3 other meeting rooms.  This was to give us an opportunity to see the new building and meet new people.  I hooked up with one of the people at my table and off we went.  I followed my partner around the building, going down hallways, to the main reception desk, and finally back to the room. Introducing myself to new people was interesting! But everyone was very receptive.   It was a little challenging to drive REATA 3, but not too bad.  It was actually really fun.  It won’t let you drive it off of a step and it tells you if you are close to running into something.  It will display a message on the screen that says, “rear object” or “tall object”.  If you do bump into something, it will put a callout symbol with the word “BUMP!” in it!  Kind of funny!

During the two days of the meeting, I was able to work in a small group discussing various topics.  I was able to participate in the time when we used chart paper and shared activities we were doing in our part of the state.  Someone wrote my stuff down for me as I told it to them.  Then we took turns reading and explaining the activity on our charts.  I just talked and everyone in the room could hear me.

We took a selfie at the “Selfie Wall”.  I uploaded it below.

This is just so cool.  I had heard about it being used with children who are homebound due to illness or who can’t attend school for other reasons.  But I never thought I’d get to use it myself.  It is really easy to do and you don’t have to be “techy” to understand how to use a VGO.  But if you are “techy” you will love it!

VGo robot, REATA 3, with my picture on its screen.

VGo robot, REATA 3, with my picture on its screen.

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Rant

For years now I have worked in a career of helping others; helping children who are blind or visually impaired to learn, helping families find resources, and have even been on the receiving end of these same services myself as a child and adult.  Texas has an excellent  entity called the Division of Blind Services under an agency called DARS.  The Blind Children’s Program and the transition program offer a huge amount of support to qualifying consumers.  As an adult the Vocational Rehabilitation program has been a huge help to me personally.  I wear biopics for driving.  These are glasses that help me see the details like reading signs through telescopic lenses.  They are very costly and the VR program has purchased these glasses for me on 3 different occasions over the pat 20 years. For this I am extremely grateful! I have never had a single problem with the Division for Blind Services.  I cannot, however, say the same for the Division for Rehabilitation under DARS.  

You see, the rehab division has a waiting list for services.  I remember a few years ago the state was going to impose a waiting list for the blind children’s program and the visual impairment field fought it heavily – and we won!  Hmmm… wonder what happened on the rehab side?  When I was in Baylor still in Rehab, I was told I needed to call DARS rehab division as soon as possible to apply and get on the waiting list for the comprehensive rehab program.  I did this.  That was in April. By August I think I finally got on the waiting list.  But by that time almost all that the comprehensive rehab program would have paid for was already done – through a ton of donations and volunteers.  This included things like my home modifications including the addition of an accessible bathroom and closet and purchasing a wheelchair accessible van that I can drive. But at least I was on the waiting list and that would pay for additional physical therapy.  But then one day my counselor calls me and asks me if I think I would rather apply for vocational rehab services since I was already back to work part time.  The point is I DON”T KNOW! That is what they are for… to inform me! Unfortunately, I couldn’t get to the phone the day she called, so she left a message.  And since then I have been unable to reach her – I’ve left her messages.  

So also back in August I applied for other services through an agency called DADS – Division of Aging and Disability Services. They have a program called Community Based Alternatives.  I understand they would pay for someone to come in and help with household chores and getting me dressed.  They would approve so many hours a week.  In August they told me that in a couple of weeks someone would call to arrange an evaluation.  No one called until November! Then the person, who was really nice, just wanted to know if I was still interested in the program.  I said “yes”.  She said services would be available in December and someone would be calling me to set up an evaluation.  It’s January and no one has called.  

A few weeks ago when Richard hurt his back and we could not cook, clean, and get me dressed, it all came to a head.  Stress levels were high.  Our friends came to our rescue, coming in to get me up in the mornings, help me to bd at night, bringing food, doing the dishes, taking out the trash, etc.  But I got on the bandwagon of trying to rouse up some services.  My friend who is a social worker gave me the phone number for the local DADS office and my interest list number – that’s like my account number, essentially.  I called the number and the first option was to apply for services.  That’s not what I needed.  The second option was for people who already had services, and none of the other options applied to me.  I ended up calling back numerous times and trying eat option.  But i never once got through to a person.  It would tell me to call somewhere else “for information” – no doubt more pre-recorded messages.  

Sorry for the rambling… but here’s my point at last….

I’m now paralyzed, my husband is blind, and we can’t get help. But there are plenty of other people much better off than we are physically, and they get help.  They have people coming in to do the very things we need done.  But i can’t even get someone on the phone!  This is ridiculous! I’m not down on people who get services they NEED, food stamps, all of it.  But when we had to fight like crazy just to have our mail delivered to a mailbox at the end of our driveway instead of the community mail box location, which is totally inaccessible,  and now we can’t even get an evaluation…. REALLY?  

This situation makes me understand what parents go through sometimes when they have children with multiple disabilities.  They have to learn to navigate “the system” and what a disjointed “system” it is.  So many acronyms, people, programs, guidelines, etc. Helps me understand what they go through and their frustrations. 

Having said all of that, I know we are very blessed.  It’s just frustrating and a little scary because if something really happened to Richard to where he was unable permanently to do the things he does, The devil tries to make me think I’m going to end up in a nursing home… even though I have a van and am able and do drive myself to work, grocery store, etc.  This has been a real fear of mine.  So yesterday when he re-injured his back, this fear came on me again.  And I almost let it get ahold of me.  But as I drove off to go get some lunch for us, I was like, “Nursing home – my behind! I am not going to end up there!” And after that I have felt more peace about the situation.  But we still do need help.  Time to get back on the phone…

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