Visit to The Dentist
December 7, 2018
A couple of days ago, I went to 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 an 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 the 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 bit 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 get 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 work has to be done but I can have it all under sedation.
Election Time
November 9, 2018
Years ago, after the “hanging chad” election, the electronic voting machine was developed. The developer wanted to make it accessible to people with disabilities and I was asked to test the voting machine’s alternative access methods. These methods consist of scanning with switch(s), a 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 was 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 selection 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
October 2, 2018
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 a 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 were 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 that everybody uses.
I wonder if service providers (agencies 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 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 Issues
September 16, 2018
A common requirement among a lot of people with physical 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.
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 of the time they only have one backup for ten people. They are also shorthanded!
Dave and I are also faced with the 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 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 email 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 advertise 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 pages for different purposes such as job postings. This is a new way Dave and I can find attendants; we post our attendant ad on different Facebook pages around Austin. We still get some no shows (not as many as we did before). I hope this helps!
AAC vs. My Own Voice
August 22, 2018
Sometimes I often assume that people who work with people who have disabilities automatically will understand me. My assumption is farther than the truth and I am ashamed that I assumed this. I quickly realize they don’t understand me from their factual expressions, their blank stares. I feel like an idiot so I immediately start using my communication device. Although with my caregivers, I will use my communication device when they first start, but after a week or two they begin understanding my speech.
So, I will start spelling words so they begin to understand my speech patterns. Slowly but surely, they pick up my speech and they can understand everything I am saying. They can serve as my interpreter when people can’t understand me. This doesn’t mean I don’t need to use my communication device, but when I am trying to communicate quickly my attendant serves as a great interpreter.
I mainly use my communication device when I speak to a large audience. I am not speaking face to face to them so I can’t tell if they are understanding me or not. I wonder what it would be like if I gave a fifteen minutes speech using my own voice. I think it would be a total disaster. People would be whispering, “What did she say?” Laughing at odd moments, totally awful.
I had a similar experience happened to me when I was giving a speech to a large audience (about 500 people) to receive an award for my achievement using assistive technologies. I had prepared a speech in my communication device so I thought. I actually had almost a whole week to work on it because I was off of work due to an ice storm. I worked for a school district and they called off school for four days. I thought to myself, “I needed this otherwise I didn’t know when I would get my speech written.” I remember having difficulties writing my speech because I wanted it to be perfect. So, I guess I had three different copies but I was sure I had the right copy in my communication device. I rechecked it like four times.
The day of presentation I barely got there in enough time to take my spot in the panel. There were multiple people who were being recognized for excellence of overcoming their disabilities with the use of assistive technology. When it was my turn to speak, I pressed the button on my communication device to make it talk. It went smooth until it got to the end of the fourth sentences and it quit speaking because nothing else was there. I panicked for a second and said “oops, the rest of the speech must be on another flash drive, one second please” motioning to my friend who was in the audience to come up and bring my flash drive bag. Oh, which one was it? I tried another flash drive but it was not on the right one either! Took a deep breath and I spontaneously started talking with my communication device. Afterwards I just wanted to go to my room, I was so embarrassed. My friends said I did a great job at recovering myself. To my surprise, I was the talk of the conference in a good way. People were astonished how well I could spontaneously communicate with my device.
Aqua Therapy
August 8, 2018
Throughout my life I had physical therapy which has made a huge difference in my abilities. When I’m not doing therapy my balance, posture, and overall control goes downhill. It affects how much assistance I need with my transfers. I love when my attendants say, “Wow, I hardly had to do anything to transfer you.” For the past two years, I haven’t had any therapy and I could tell my coordination and balance wasn’t what it should be.
Through my Medicaid waiver program, I can receive physical therapy, occupational therapy, aqua therapy, etc. I have had a physical therapist but unfortunately my physical therapist had to retire. I couldn’t find another physical therapist so I decided to try aqua therapy. I didn’t really know what to expect but it was in the pool and I loved the water. It took a while to get It going due to locating a facility with a pool that would allow an aqua therapist to work in. It was crazy because I was a member of the YMCA, but the one closest to our house wouldn’t let an aqua therapist in their facility. We finally discovered another YMCA that would let an aqua therapist practice there. Thank god!
Aqua therapy is amazing. I can do “normal” exercises that people do outside of the water. I jump, do all kinds of leg stretches and arm movements. It is incredible to feel my body do things I didn’t think it could do. The buoyancy of the water takes off the weight of your body which makes me as light as a feather. Now I am not saying it isn’t hard work, it takes a lot of coordination for my brain to tell my legs and arms to move at the same time, it is an intense workout. I can feel the burn for days after. I only have aqua therapy once a week, I wish it was twice!
These are My Attendants; This is My Attendant on Drugs!
July 9, 2018
Things are finally getting back to normal as far as attendants go but I wouldn’t hold my breath! Dave went to the art studio today and I am writing my blog. We hired three new attendants who can work for us both which is awesome in case someone calls in, so now we have backups. It was difficult when we weren’t together as a married couple to find attendants, but now it was extremely difficult to find double the attendants. Dave and I like to have two attendants at a time because we each have our separate things to do. Although some nights, we will have one attendant because we are usually together in the evenings.
The last couple of months, Dave and I had the worst luck with attendants. The attendant story that puts the cherry on top is the woman who we found passed out in her car in front of our house. She was supposed to come at 8:00 in the morning but she called me at about 8:15 saying she was running late and she would be there in ten minutes. Well, ten minutes came and went and Dave’s attendant who was scheduled to come at 10:00 came in with a confused look because he was expecting to see my attendant because her car was in front of our house. I called my back up attendant and she came over while Dave got ready for the day.
By the time my backup arrived Dave was in his wheelchair and, my attendant and his went out to the car. They saw her inside the car unconscious and they knocked on her widow to try to wake her up but she wouldn’t. So, they called 911 and requested EMS and the police. Long story short, she was passed out on crack and the police found a pipe and some pills. I think EMS checked her over but she was okay and quickly arrested.
A few days and she tried to get her job back. She told us that she had a seizure that was why she passed out. The interesting part about it was she couldn’t provide a letter from her seizures because the emergency room diagnosed her. At this point, we knew she was lying!
Living a Normal Life
May 7, 2018
Usually my blog is about AAC but I would like to discuss the phrase “Living a Normal Life”. Living a normal life can be subjective in that people define normal differently. My normal has always been what the average person accomplishes in their life. For instance, I was with an able-bodied man for fifteen years. Did that make me more normal than marrying a man with a disability? I guess some people think that being with an able-bodied person makes them look more normal.
Now I have been married to a man with a disability and I truly don’t see the difference. However, personality wise I prefer my current husband because we like to do the same things and we share a wicked sense of humor. We like to go to concerts and we really enjoy taking trips together just like a “normal” couple. Some may say my life has been more than average since I went through a separation.
For all of the people who think being with somebody who is able-bodied I want to tell them it doesn’t make you more normal. You still have a disability either way.
Internet Conference Possibilities
April 3, 2018
The first Pittsburgh Employment Conference (PEC) was in 1992 and was organized by Support Helps Others Use Technology (SHOUT). The purpose of the conference was to raise awareness of the extremely high unemployment rate of people who rely on AAC. Although the initial focus of the annual conference was employment, other topics such as sexuality, depression, and growing older were also addressed. The conference also gave people who rely on AAC the opportunity to socialize with each other and form lasting friendships. Unfortunately, due to funding issues there hasn’t been a PEC since 2011.
Most people use software such as Go-To-Meeting or Skype as a way of collaborating and sharing ideas with one another across the country. This concept has been applied to conferences where the presenter has videos of their speeches and the conference participants can tune in and watch. Then the conference organizers setup scheduled live chats with the presenters to answer questions and interact with participants. I think this idea can be applied to revive PEC because it is cost efficient but it still enables interaction.
I would like to start a discussion about having a similar conference via the internet. Please share your suggestions and comments following this blog or on Facebook. I would love to hear from users, family members, and professionals on this important subject.
My Bad Arm
March 28, 2018
Over the last few months, I have been having difficulties accessing my SGD. Normally I access my device with my left hand, but I have lost control over it. This makes me feel very frustrated and angry that I can’t do what I used to. It is kind of like breaking your arm and it never heals. I always hope that one day I will wake up and it would miraculously work again. I find myself getting depressed because I have lost another ability.
About a year ago I started to get Botox in my right arm and hand to help stop the involuntary movements. It did help a great deal so I thought I could get the shots in my left arm and hand to help me have better control. However, my doctor told me I have a lot of dystonia (Involuntary muscle contractions that cause repetitive or twisting movements) in my left arm and Botox wouldn’t help. So he has referred me to a brain and spine neurologist to have further tests.
In the meantime, I am trying different access Methods to see if I can access my SGD more efficiently. People always think eye gaze is the answer but it doesn’t always work, especially if you can’t hold your head completely still. I do have personal experience with an eye gaze system and it was frustrating at best because I continuously moved out of the camera’s line of sight. The camera kept needing to be recalibrated which wasted a lot of time. I have also tried scanning with a single switch but I found it very time consuming and slow.
The best option I have found so far was the Tracker. With a Tracker a special camera is attached to top of my SGD which tracks light from a reflective dot that is on my glasses. The reflection moves a cursor on my screen and I can select the buttons I need. I like how I can adjust the sensitivity of the cursor movement to compensate for my involuntary spastic movements.
Facebook App VS Logging into Facebook on the Web
February 12, 2018
Everyone is on social media these days, from Facebook to Twitter and others. I am more of a Facebook woman myself. I use it as a leisure activity to catch up with family and friends. I post, read family and friends’ posts, leave comments, and view pictures. My husband likes to play games on it. Several months ago I had the opportunity to meet with the accessibility team for Facebook. They wanted to know how I used Facebook with my communication device. I showed them the Mouse Arrows which allow me to control the mouse myself. I have pretty good accuracy and get faster every day. Although, it is still time consuming for me to use my mouse keys, so they taught me a couple of key shortcuts to help me navigate through Facebook. Unfortunately, these only work by logging into Facebook on the web instead of the Facebook app. These are the following short-cuts:
P = Make a post
J = Forwards
K = Backward
L = Like a post
C = Comment on a post
There are benefits to using the Facebook App with an integrated SGD device (a SGD device that can access the internet). The Facebook App can be pinned to your taskbar (the top line when Windows is activated) which gives the user easy and quick access to Facebook. Of course if you don’t need to use “short-cut keys”, the app is much easier to use. If I enlarged the text on the App, I am able to scroll through the news feed with my fingers; which I love.
The Upside
January 22, 2018
Last 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 storyline of every movie she is in such as the Bird Box but I still watched it.
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