WHAT DON'T THEY UNDERSTAND --PART II

WHAT DON’T THEY GET—PART II ---- Handicap parking spaces...................... Last week my husband and I went out for breakfast to a small diner we've been to many times before. They have two handicap parking spaces in the front separated by a yellow striped walkway that leads to the cut out ramp to get up into the restaurant. Both handicap spots were empty, but a large delivery truck Van was parked on the yellow striped area, making it impossible for me to get my wheelchair out of my Van or open my door, or get my wheelchair up onto the sidewalk and into the restaurant. My husband went into the restaurant and found the truck driver talking to the owner. He asked him to please move his truck. In all fairness the gentleman came out immediately and did move his truck. I made the comment to him that it was very inconsiderate to park there. He looked at me like I was crazy. My husband says that he did not actually park in a handicap spot. He was just trying to make the delivery easier for himself. I don't see that as an excuse. I guess I am over sensitized to this issue. But too many times I have seen a car with handicap plate’s drive up to the supermarket, park in one of he few disabled parking spots, and two or three young able teenagers jump out and literally run into the store. It is obvious that they are driving their parent or grandparents car. This does not give them the right to park in one of those spaces. I know that if I called the police they would probably ticket the offending person, but by the time the police would get there, I am sure that the offending person and car would be gone. The police have better things to do. Am I wrong?

Have things improved for us over the past four years? The answer is absolutely yes they have. My husband and I are 61 years old. We have worked all our lives paid taxes, bought a home and were looking forward to “the Golden Years" of our life. Then, I became disabled. I cannot work, or drive and just when we thought we were making ends meet....the recession hit. Four years ago we were near bankruptcy and afraid of losing our home. We had to use most of our retirement funds just to stay afloat. My husband was unemployed, and without health insurance. I am permanently disabled and use a wheelchair full-time. Today: we have received a home loan modification because of the Obama “Making Homes Affordable program, which made it possible to stay in our home. My husband has a part-time job, and acts as my caregiver the rest of the time. I receive Social Security Disability benefits, and Medicare (These are not ‘Entitlements” these are things I paid into during my 35 years of working). We have been able to find somewhat reasonable, low-cost health insurance for my husband. We look forward to the Healthcare Reforms act becoming permanent and long-term for us and for others in our position. Through a Federally funded State run program I was able to get my bathroom remodeled to make it wheelchair accessible so that I could stay in my home and not have to go into a nursing facility. These types of federal aid have helped us tremendously. I believe in my heart that if it were not for programs we might be on the streets or living under a bridge. Yes. Life is better now.

WHAT DON'T THEY UNDERSTAND!!!

What don't they get? My husband and I went up to Flagstaff for a few days to cool off. We stayed in a lovely hotel called Little America RIGHT IN THE PINE TREES. I asked for a wheelchair accessible room with a roll in shower. I made it very clear when I made the reservation that I could not walk and use a power wheelchair. We got up to Flagstaff and the hotel was lovely. Lots of accessible parking, accessible ramps to get into the hotel, accessible dining room and gift shop. We checked in and went to our room. The room was large with a King size bed. The bathroom was large, however… the accessible shower was a disappointment. There was no fold-down seat, only a small plastic shower bench. When I tried to use it, it was very wobbly and unstable. There was one grab bar on the far side of the shower, which was slippery and not easy to grab hold of. There was no place near the shower to hang a towel and no shelf or area to put soap, shampoo or conditioner. I understand that people who are not in a wheelchair or do not live with someone who uses a wheelchair really don't understand the needs of a person with a disability. However, I feel that they should ask. What an idea! Surely there are people that can go in and test a room to see if it really is accessible. I did okay. We had a delightful time, it was cool and I love the smell of pine trees. Yes we had some rain but after living in the desert that was okay too. I JUST GET SO FRUSTRATED!

WHEELCHAIR ACCESSIBLE ISREAL In March 2012 my husband and I took a long awaited tour to Israel. Only issue was that I use a wheelchair full time. Not a problem. I found a tour company (Israel4all.com) that specializes in tours for people with special needs. Best of all the owner/Operator Eli Meiri knew where all the wheelchair accessible bathrooms were! It was a small group, seven strangers who soon became like family. The tour bus was an oversized van with a lift in the back, individual seats on each side and space in the middle to tie down wheelchairs. We spent 10 incredible days eploring all of Israel; The Jewish sites, the Christian sites and the Roman sites. Our room in Tel Aviv was large and had a very large accessible bathroom. The hotel in Jerusalem was also very user friendly. Friends tried to tell us not to go because of all the political unrest there. However, be assured there are not soldiers with machine guns at ever corner and we NEVER felt threatened in any way. Accessibility varied among the tourist sites we visited, but generally was pretty good. The Israeli government is trying very hard to make things accessible for people with disabilities without destroying the ancient sites they came to see. We found good accessibility at sites such as The Sea of Galilee and Jerusalem, which has an accessible route developed by the Jewish Quarter’s Center for Tourists with Disabilities. At Masada, where Jewish rebels made an epic stand against the Romans nearly 2,000 years ago, we took an accessible cable car to the top of the Fortress and accessible pathways led us around the site as our guide explained the history. It was an incredible sight to see. Traveling with a group of people in wheelchairs was, for me, very empowering. I didn’t have to worry about keeping up with the group or being embarrassed about using special eating utensils. Unlike most standard tours, we usually began our day a little later to give us the extra morning time we needed .Our tour guide, Eli, was sensitive to our needs and flexible enough that if the day was getting too long for us, we could rearrange the schedule to push something off until the next day. It was a trip of a lifetime and something I will never forget. Did I say the food was wonderful!!!!!!

Conventional Wisdom

Conventional wisdom says go to college and you can get a good job. I did. Then the recession hit and I lost my job.

Conventional wisdom says you should have six-months salary in savings in case you lose your job. I did. That is all gone,a long time ago.

Conventional wisdom says put your money into a retirement account and let it grow.
I did. But I eventually had to use most of it just to pay my mortgage and medical bills and avoid living under a bridge.

Conventional wisdom says buy a house... It's your best investment. I did. Now, my house is underwater and is not worth the mortgage we owe on it.

Conventional wisdom says you can refinance your house and use the money from that. I can't. Our house dropped $200,000 in value in the housing bust.

Conventional wisdom says the Golden years of the best. They're not.

Conventional wisdom says everything is all right as long as you have your health.
I don't. I was diagnosed several years ago with a neuromuscular disease. I can't walk. I can't drive. My husband has to cook my meals and cut my meat for me.

Conventional wisdom says things will get better. I certainly hope so.

Meltdown at the Mall

Meltdown at the Mall...or..
I have always depended on the kindness of strangers.

I went to the mall today. Not an unusual event for most people, but I am a person with a disability, and I use a wheelchair, I live in Phoenix and it was 113 degrees, so going to the to the mall is an event. I needed to get a formal dress for a cruise that my husband and I are taking for our 25th anniversary. I had no idea it would turn out to be the worst day and the best day I’ve had in a long time.

My husband left me at Macy’s, and we agreed to meet in two hours in front of the mall. I went up and down the aisles of the store looking for something in my size. Something that would be easy to wear, comfortable and attractive.

The first step is to find a wheelchair accessible dressing room. This is usually do-able. Once in the dressing room, things get a little more difficult. They usually have grab bars, but they are seldom in the positions I need them to be. Getting in and out of my clothes without help, and then trying to hold on to something so I can stand up and look in the mirror to see how I look becomes an exhausting task.

I tried on about a dozen different outfits. None of them worked. Too small, too big. wrong color, not me. It was now past the time I was supposed to meet my husband so we could go home. I was tired, my hair was ruffled, and I needed a nap. I went out into the mall and found my husband. When I began to tell him why I had bought nothing I started to cry. It was suddenly all too much. Then I started to sob.

A 60 year old women in a wheelchair sobbing is not a pretty sight. Now understand, I usually keep a pretty good attitude, but this day I was having a very bad time. I just felt so old (I am turning 60 soon) and for the first time I felt old, disabled and yes, the word no one wants to use..... handicapped. But I did not want to go home empty-handed. So I told my husband I was going to try another store in the mall. Lane Bryant. A smaller store. Made for “women of a certain size”.





I entered the store, and a sales woman immediately came over to me and asked me if she could help. A told her I had just come from Macy’s with no luck and explained what I needed. I started to cry again and tried to explain that I am usually not like this, but was having a very bad day. She chose several outfits for me to try on and stood outside the dressing room in case I needed any help. Again none of them worked for me. I was tired and near tears once more.

Now comes the most amazing part. She told me that she shops at Macy’s often and knows just what I need and where to find it and she would come with me to the Macy’s store and help me pick out an outfit. “Come with me to another store? Help me pick out an outfit? Can you do that?” Apparently she could. So off we went to Macy’s.

Up and down the aisles she went pulling things from the racks, then on to the next aisle, pulling other things asking quickly, “do you like this? How about this? Color? Style? Before I knew it we had a handful of things to try on. She found me an accessible fitting room and came in with me to help me dress. By this time I was so tired I could hardly lift my arms to pull on a dress or blouse....but...with her help..

I ended up with the most amazing dress, a long dress with a little sparkle and lots of zing, a beautiful dressy blouse and a gold sweater to throw over my shoulders on a cool evening on board ship. She then took my merchandise to the checkout counter waited with me while I made the purchase then made sure I was delivered safely back to my husband.

I ended up getting exactly what I needed, and it was all on sale so I even ended up saving more money than I spent.

Her name is Melissa, and she is an angel.

Best New Years Gift Ever!

Best gift of the New Year.

I never thought I would be so excited about getting a new toilet, sink and shower, but my new fully wheelchair accessible bathroom has made such a difference in my life, my attitude, my outlook, and my dignity.. that I believe this to be a life-changing event.

Let me go back to the beginning. I was diagnosed 10 years ago with the neuro- muscular disease. No treatment, no cure. It’s progressive and over the years I have gone from using a cane to a walker, to a power wheelchair. I can no longer drive, walk or work. The last few years, even though my husband put up grab bars in the bathroom, I began having trouble using the shower and toilet. This also became a safety issue. I needed help getting in and out and up and down; very depressing for a formally active, independent woman.

I collect Social Security disability, and there is no way I could afford major renovations to my home. The outlook was dismal. Then I heard about a program through the state of Arizona Independent Living Rehabilitation Services. It is designed to allow people with disabilities to stay in their home rather than have to go into a nursing home for care. It sounded too good to be true, but I thought I would apply anyway.

In late 2009, I called and set up an appointment for an interview with a counselor.
We spent a few hours with Susan, discussing my diagnoses, my needs and our financial situation. She thought the program could help me. Several weeks later they called to set up an appointment for an Occupational Therapist to come to my home and help decide what renovations would benefit me the most.

It was decided that the bathroom was the number one priority. However, I have a minivan that had an old wheelchair lift in the back that had seen better days. It was also becoming more and more difficult for my husband to get me into and out of the passenger seat of the van when we went out. So it was also recommended to provide me with a new lift and power seat. The seat actually comes out of the van and lowers to the ground by a remote control, and then lifts me back up into the Van. This is one of the most amazing things I’ve ever seen!

Of course, before any of this became a reality, they had to get approval.
Before that happened, the economy crashed, and the program lost its funding :-(.
To say I was upset is an understatement. But this is not the end of the story.

In April of 2010 I received a letter from the agency saying they had gotten more funding, and I was on top of the list again. Joy! They were now going to send another OT to the house to review my case again. The second therapist agreed with the first report that the priorities were making my bathroom wheelchair accessible, and adapting my Van so that I could go out into the community.

Again, we had to wait for approval since the cost of this was going to be significant. I waited. I began to get discouraged and wondered if this was ever going to happen. Then I received an e-mail saying that the van modifications were approved, and someone would contact me soon to schedule a time to make the modifications. Next they scheduled time for a contractor to come to the house and look at the bathroom and make his recommendations. Again, it had to go in for approval because of the high cost. Again, I waited.

Just before Thanksgiving of 2010, I was told that the bathroom modifications were approved and would start shortly.

Next thing I knew there were workmen, noise and dust all over my house.
The tub came out and a flat wheelchair accessible roll in shower went in. A fold down seat was installed, the vanity cabinet came out and a pedestal type sink was installed so that my wheelchair could fit under it. A new ADA type toilet with wraparound grab bars was installed, with maybe the best thing of all, a bidet, with a self warming toilet seat! This would allow me to conduct my daily personal hygiene with some measure of privacy and dignity. Don’t laugh, it works. They installed a cabinet with shelves and drawers so that I could also use this space as a dressing area.

Since this is also our guest bathroom. I really wanted it to look nice, so I bought a new shower curtain, a new light fixture, some pictures for the walls, new towels and my new bathroom looks like something out of house beautiful. It is Functional and safe for me, and beautiful for guests. I could not be happier.

Thank you AZ!