My Life, Not Yours

Lately I have felt like people are not respecting the way my husband, Dave, and I like things done a certain way in our home. I am very grateful for the help but I just need people to be my hands and legs.  Mentally I know exactly how I want things done although I don’t want to be a micro manger. such as sweeping/mopping, making the bed/changing sheets, etc. You would be surprised some people don’t know how do these basic tasks.

For instance, once Dave and I were still asleep and our attendant decided to rearrange things in living room. I didn’t particularly notice but Dave did, and got mad. I agreed with Dave and thought it was a very strange thing to do. Another time I had told my attendant multiple times to throw my wet depends in the main trash can in the garage instead of putting them in the bathroom trash so the bathroom trash wouldn’t smell. Yet another situation occurred with Dave, he asked one of our attendants to only feed the fish a certain amount of food and she disagreeing about the amount of food. It is like I don’t know anything about fish so I don’t get involve with the fish.  I trust he knows how much to feed fish because he has had fish throughout his life so he should know.  I feel like it is our house why can’t people respect how we want things done without disagreeing with us.

We have so many attendants coming and going.  If we changed our lifestyle every time we got a new attendant to meet their lifestyle, we would changing our way of living every six months.  Dave and I just want to live the way chose too.

Start To Independent Living

I recently wrote the following for my wring group Speaking Advocates with VSA of Texas.

I remember being a senior in high school and preparing to leave home to go to college. It had been a dream of mine as far as I can remember, to live on my own and attend college. I have two sisters who both graduated from high school, went to college in different cities as our home town is Houston so I had the same expectation for myself. Of course my mom and I had to do some intense research on independent living programs that could support my physical needs as well as my living arrangements. I would need to live somewhere that had an accessible bathroom wider door openings, etc. At some point early in my senior year, we remembered an independent living program in San Antonio. It was established by a group of parents that had adult children with severe physical disabilities and they were concerned who would take care of them when they weren’t able to anymore.

Every year the program took a group of seven physical people with physical disabilities through a comprehensive independent living training program. We learned skills such as budgeting, kea checking account, handling attendant care, etc. At the end of the training program all seven participants moved into fully accessible apartments and got on section eight housing. Money was raised by our family and friends to do the modifications to the the apartments. This was one of the important essential part of moving into our apartments in order to pay for the modifications allowing us to get in and around our apartments.
I got accepted into the program my senior year of high school And I was so excited to move into my own apartment and start college. For graduation I received a lot of money to buy furniture for my apartment. I had everything I needed and packed up. My oldest sister and I drove up to San Antonio to start putting my stuff in my apartment. Than my mom and stepfather came up to help. I was so excited all of the time until the last night, and a switch went off in my head that my mom would be leaving the next morning. I started flipping out big time. I told my mom this was a big mistake, I couldn’t live on my own three hours from her. I pitched a fit in the middle of a restaurant parking lot. It was horrible.

With a great deal of hesitation, my mom drove back to Houston leaving me in my apartment. I was a wreck over something I had dreamed about almost all my life. I think I called my mom at least 20 times a day begging her to come pick me up. days went by, than a week, and than two weeks. I slowly warmed up to my attendant, started college, and made a couple of friends. Plus, I had my fellow independent living friends who also lived in the same apartment complex as me. Within a month I was with in the swing of living on my own but it was one of the hardest beginnings, I had in my life. it was also a life changing one as well.

The Upside

upside picLast weekend my attendant, husband, and I saw the movie “The Upside” which is the English version of “The Intouchables” which is in French. The movie is about a man who is a paralyzed billionaire (Bryan Cranston) who strikes up an unlikely friendship with a recently paroled convict (Kevin Hart) whom he hires to take care of him. I saw both movies but I liked “The Upside” the best because I didn’t have to read the subtitles.

I was caught off guard by the number of people who were there to watch the movie. Were there really that many people interested in watching a movie about a paralyzed man and his attendant? Shortly after the movie started, I realized it had many famous actors and actresses in it such as Nicole Kidman, Julianna Margulies, Aja Naomi King and Bryan Cranston and that was probably why there was a large audience. It is like how I love to watch every movie with Sandra Bullock. I may not like the story line of every movie she is in such as the Bird Box but I still watched it.

I thought it was extremely engaging to use famous actors and actresses to show people how daily life is for someone with a physical disability. Of course, not everyone with a physical disability is not a millionaire, quite the opposite, though hiring attendants is an ongoing issue. My favorite scene in the movie is when Bryan Cranston “Phillip” has a hall full of attendant candidates with many years of experience. When it is Kevin Hart’s, ”Dell”, turn to interview, he expects to be turn down for the job (he has no qualifications or experience as a care taker) and just get a signature that he applied for a job. instead Phillip and Dell has a hilarious exchange of words and Phillip offers him the job. Dell has no idea what he has to do as Phillip’s care taker and is taken back by all the physical care he needs to do for him. It is exactly what I would do, higher the person no experience over the person with 10 years. I like to hire people with an awesome personality.

I highly recommend this movie.

Visit to the Dentist

unnamedA couple of days ago, I went the dentist and like most people I dread going to see the dentist. However, this time I wasn’t anxious because, even though I was only getting x-ray and a cleaning. I was put under sedation. It was so nice not having my tongue move all around as it would always get in way during my teeth cleaning. I remember the dental hygienist always saying to try to hold your tongue out the way about 100 times. I thought to myself “No, I am purposely holding right where you need to clean.”

One time a while ago I had a terrifying experience when I was getting x-rays taken of my teeth when sedation was not commonly used. The hygienist was having trouble putting the film in my mouth. I swear to this day she told me to bite down and when I did, her finger was right between my teeth. I bite down hard and felt so embarrassed.  To make matters worse the dentist practice was mad at me and accused me of purposely biting her. I just wanted to the hell out of the office but I had to wait for my ride. That was the longest thirty minutes. Needless to say, I was banned from the dentist and there was no way I was going back there anyway. In fact, it was many years I would step in a dentist office. Hence now a lot of dental done but I can have it all under sedation

Election Time

voting machinesYears ago, after the “hanging chad” election, the electronic voting machine was developed. The developer wanted to make it accessible people with disabilities and I was asked to test the voting machine’s alternative access methods. These methods consist of scanning with switch(s), screen reader, and earphones. I don’t exactly remember how the scanning works but I think if two switches were plugged in, one switch would advance to the next selection box and the other switch would select.  When the earphones were connected it would read the ballet, although I don’t know if the voting machine reads the ballot in Spanish.

The place I voted at during the 2018 midterms had one accessible voting which in use. I could have waited for it but decided to try to reach a standard voting machine (I was in a hurry). I quickly discovered I couldn’t reach it and thought I needed to wait for the accessible machine.  My attendant suggested putting the machine on my lap tray so one of the voting poll staff came over and helped put it on my tray. This was a great accommodation for me.  However, when my husband voted his attendant had to sign an affidavit so she could do the physical selecting on the voting machine.

I find it interesting that the voting staff didn’t ask if we needed any alternative access methods.

Our Trip to Fredericksburg

Last week Dave, my husband, and I went to Fredericksburg which is a little town in the Texas hill country to celebrate his birthday. I was amazed how wheelchair accessible it was compared to 10 years ago. I remember going there with my mom and step-dad, I could only get into couple of restaurants and stores with my wheelchair.  This time we had no problems getting into buildings (stores, restaurants) and they had curb cuts on every side walk.  We also stopped at wineries along the way and they were all accessible. It was a wonderful trip.

Ironically, a friend of mine texted me while we there asking my opinion on portable ramps. She wants to be able to get into people’s houses.  She had been looking on Amazon for portable ramps. I looked at the site as well and compared them to the one Dave has.  I couldn’t find the exact same one but I was able to make recommendations on similar ramps. I think it is so cool that “medical equipment” on Amazon, a website everybody uses.

I wonder if service providers (agency who purchase equipment for consumers) use Amazon to buy equipment.  Dave told me about how he got his portable ramp. It was when he got his first job, there was not a curb cut on the sidewalk by his office. He was obtained the through a service in Ohio.  We still use it.  Sometimes when there are two or three steps with gaps in between them, we are able to move the ramp to one step at a time.

Attendant Care Problems

attendant care pic

 

A common requirement among a lot of people with physically disabilities is attendant care. Attendant care is almost as important as eating, though you can’t eat without attendant care. My husband, Dave, and I are on the Consumer Direct Services (CDS), which means we do all the hiring and firing of our attendants. We chose this over going with an agency because attendants from an agency would not be able to drive our vans which we need. Although, sometimes it is really hard to find people to work as an attendant when you have to do the recruiting yourself.

no money

Another problem with finding attendants is the pay is ridiculously low due to the rate set by the government which isn’t competitive to the average rate for the economy. My experience with agency option is they also have difficulties hiring applicants due to the low pay. Plus, they are supposed to provide a backup attendant when a client’s regular scheduled attendant can’t make it. This is not always reliable because most they only have one backup for ten people.  They are also shorthanded!

Dave and I also are face with problem of applicants not showing up for an interview.  We don’t understand why people schedule an interview and then not show. It is very disrespectful and is a waste of time. I wonder if people not showing up for an interview is common for other companies like Dell Computers, Apple, Health Care Agencies, etc. Even if they received a better offer, they should e-mail or call us to say so! We don’t like getting dressed on a Saturday just to wait for a no show.

One of my blog followers’ son just started college and he is living on campus. He has a physical disability and relies on attendant care. Even though he uses the agency option, they can’t find any attendants. One suggestion I have is to advertising on campus. This is something I did when I was in college. I would think the college has its own Facebook page or students that students\groups who created Facebook page for different purposes such as job postings. This is a new way Dave and I are finding attendants, we post our attendant ad on different Facebook pages around Austin. We still get some no shows (not plas many as we did before). I hope this helps!