Response to article written in the NY Times on July 26, 2020 about the ADA.

 

When your born, you usually have all the opportunities, hopes, and dreams you could ever want. After my birth however, all my family could think about doing was helping me live.  This is because after all the scary part was over my family found out that I had Cerebral Palsy. Both my parents and my sister were terrified about what this meant for my future.  

Five years after my birth in 1990 the ADA (Americans With Disabilities Act) became a vital part of my future and my life. It meant that access to the things I loved doing would become easier for me and my wheelchair. It meant that ramps, sidewalks, automatic doors, and other adaptations would now be required in the world. Employers could not prevent people with disabilities from applying for and accepting work.  

Every year or so my family and I LOVE to take trips to the Oregon coast.  Whether it’s Lincoln City, Depoe Bay, Cannon Beach or even Tilllamook fun is usually had by all attending parties.

As a small child it was easier to get me onto the sand by the ocean. My smaller stature and lighter weight aloud my parents to find different pieces of equipment to aide them in getting me onto the beach.  I had a scooter, countless baby strollers and occasionally was even just put in a regular beach folding chair.

On solid ground I was able to drive a powered wheelchair pretty much everywhere I needed to go. We did try several times to take my powered wheelchair onto the beach.  Sadly, though every time we did it got stuck and bogged down with sand. That was not a good solution either. Although it did show me time and time again the kindness of the strangers who would eventually come to my rescue.

We found a beach one year called Nye beach. This place quickly became a favorite of ours. My father, who studied Geology in college, claimed that the reason that this beach was great for us was because the sand was packed so hard because of excess waste. Whether or not this was true, the sand was packed down enough to get me down to the ideal spot to fly kites, using an adult bicycle stroller. Sooner or later I always heard my Mother occasionally exclaim “isn’t it beautiful?”

It sure was beautiful. But as both my parents got older, and I grew up and got bigger myself this was an activity that we became less able to do. When my sister and her friends were around, she would help get me to and from the sand. Even my best friend did all she could to help as well. But became evident that going to the beach may look vastly different in the future.

Years later in my life, after my Father died, I knew I needed to find a better solution to this problem. I had a beach chair that my Father had purchased before even he could not really handle. After much research and my already acquired knowledge of adaptive equipment, I found a company who made a trax system that apparently can handle all types of terrain.

So exciting right? Absolutely it is for me. It means that I can possibly keep going to the beach with my Mother and we will not need anyone to assist us onto the beach, unless they want to of course. At least that is the hope. But here is the bigger problem I face every time I need another piece of equipment. Insurance companies have a Durable Medical Equipment (DME) department. This is where you call to ask for help getting the right piece of equipment and potentially help paying for it. Once you acquire that equipment then insurance companies will support some of the repair costs. Careful though as DME has a rule that they will cover only equipment that is medically necessary. Also, as I understand it the requirement also states that equipment be used inside and outside but not one or the other.

Well I am sorry but when your disabled and use many different pieces of equipment, some costing 5, 6, 7, thousand or even more money it does not really make sense to have these kinds of rules. You can try and plead your case to their board but even then, your never guaranteed approval of said item. This does not include adaptations to your home for said wheelchair.

 Insurance is expensive and paying for these high cost mobility devices are sometimes as much as a new car. Why shouldn’t families who are paying these high fees get further assistance for equipment that helps them be mobile no matter what? Insurance companies need to lobby the industry of mobility devices to make these pieces of equipment more affordable. Many of these pieces of equipment have been round for a long time and manufacturing should cost less.

If insurance companies really want to help the handicap, then they should have the power to negotiate with DME distributors. The handicapped especially deserve to be able to be out in the fresh air on the beach, in the forest, or even living on the farm and these trax are just the thing.

Our Father

One person many Portlanders and people all over the US will never forget was my father Pete Taylor. Whether on a bus, sitting outdoors, playing football or being with family he never gave up. Pete is well known for his writing and ability to see the good in people while keeping a safe distance. He wrote a lot of different kinds of things. Pete was I hope someone people admired and relied on in times of need.

Pete was never a real emotional guy though. He rarely cried or laughed much but you knew by his expressions what he was thinking or feeling. Pete instead showed he cared though his actions and drive to make the world a better place. If you needed something he’d most times drop what he was doing to help you. You could call him 40 times a day and he always picked up, even if he was napping.  I really liked knowing that he was always just a phone call away. He’d give you a ride or the shirt off he’s back if that’s what you needed. He was also good at making others feel good about themselves even when they made mistakes or went about things the wrong way.

 There were a lot of things Pete had no choice but to leave things unfinished or unsaid. I know he is smiling down on us today because I along with my sister have helped Mom tie up a lot of the lose ends that fell to the wayside. I do know that had he had the chance he would have told both my mom and sister that he was happy and proud of their accomplishments. He would have also wanted them to know that he loved them and continues to today.

I know what happened to Pete was nothing short of fair or something he wanted to go through but he fought till the bitter end. No one can replace Pete, but I hope I can live up to the same standers he did all his life. He was a special person one we will never forget.

Medical Needs

As a child, I needed a lot of medical help because I was born with cerebral palsy. There are many services available to such children through Shriners Hospital, the local school districts and the regional and county programs. I went through a number of therapies and medical procedures. I had the opportunity to try out equipment that made my life workable, such as wheelchairs, standers, and any number of accommodations, such as having an aide in school and regular visits from physical and occupational therapists.

All that changed when I turned 21 years old. As with all other disabled people, the “services” stop, and you are left alone to fend for yourself, in all regards. If you are like me and have medical insurance, you can certainly go to doctors and therapists, but these people “specialize” in their areas and there are very few of them that deal with the problems that disabled persons have, whether or not you have insurance that would pay for such services.

For instance, I needed to have a therapist look at my posture in my power chair because my back was hurting. I was given an appointment and met the therapist that week. She told me right away that she and her department rarely see people with cerebral palsy and after going through some exercises that had nothing to do with the problem, I went home.

This has become an old story. Medical people specialize for efficiency and to get good at what they do. But a problem like cerebral palsy crosses many boundaries and there are few if any generalists that you can rely on.

This is by far the most common problem that persons with disabilities face when dealing with the medical community.

There are other problems and my next blog will discuss independent housing: “Are you poor enough to be eligible for it?”

Relationships And People With Disabilities

            Relationships of all kinds are hard for anybody. For people like me whose disability is visible, relationships with the opposite sex are few and far between. Luckily there have been a special few who were able to see through it. But, in the end something happens and they walk away. Maybe it’s because I get impatient or motivated to have what everyone else around me has.

 Friendships can lead to intimate relationships, and sometimes marriages. They can also lead nowhere. While casual friends are great to have, it can wear on people’s feelings if what you’re looking for is a soul mate. Then there is love at first sight; which is a rare occurrence.   It becomes ten times harder for people with all kinds of disabilities especially if you can see what they have.   

            People say things that are supposed to be comforting. People even try to put you in situations where you can meet people.  Statements are made like: “just try harder”, or  “put yourself out there.” While these things are true a person can only do that for so long before it just becomes laughable. If people do all of these things and still have no luck finding anyone what are they supposed to do? What does a person do when they’ve tried everything else? In this newer day-n-age, the internet and social media offer a different idea about “putting yourself out there”. But how do you know if people tell the truth about who they are and what they want? I one makes the mistake of getting into a relationship with a person with bad intentions, it will be very easy for him/her to take advantage of a person with a disability.

            Dating sites are options some people want me to try. The first site I used is advertised widely on television and suggests that it is for “Christian” people. But sadly, I will tell you that I quickly learned that there are some of the same disgraceful people on the dating site as there were off of it. I also had people asking me things one wouldn’t ask on a real first date. That’s when I got a little anxious and started questioning if this was the right fit for me. Friends and family have been supportive but have also let me have my own opinion about it all.

            A person in my life told me once, that it’s up to me to make my life what I want it to be. But it seems to be like trying to trying to play tennis with both hands tied behind your back. One encouraging thing is that there are hundreds and thousands of people enrolled on these dating sites looking for a pleasant relationship, who have no disabilities at all. Still they are there and that seems to mean that disability has little to do with success rates in this business.

Tri-Met's LIFT Program

Tri-Met’s public transportation system is useful to a great many people. From their bus lines to MAX and now even WES, if you need to get somewhere fast and don’t or can’t drive, Tri-Met provides these services to you. And for the disabled folks like me who find the big bus environment a little too overwhelming; there is something for us too.

Tri-Met’s LIFT program was made for folks like me who still want to be a functioning, independent part of society but not have to deal with so many people and the bells and whistles that commonly occur on the other services. LIFT is a smaller fleet of lift equipped buses that can provide more “door to door” services.  So far the LIFT program sounds nice from a distance, doesn’t it?

Although LIFT is run by Tri-Met, its dispatchers and drivers come from different companies. LIFT’S policy was that the drivers have a ½ hour window with which to retrieve clients who made appointments the night before. Also they made it so you could schedule rides for the week at a time.

I rode with LIFT for many of my college years, but towards the end of my time with them, things had started to get out of control. I was never quite sure if LIFT was overbooked all the time or if there was a lack of drivers. I was calling to check on my late rides almost every day, so much that some of the dispatchers knew when it was me calling again and again. I was always in contact with family and friends for fear I would be left on the side of the road sometimes for over an hour, which did happen on several occasions.

The most unpredictable part of a trip is when you wanted to be picked up from your destination and taken home. No telling when that bus would arrive, even if you had scheduled the pick up the day before.  And there is no clever GPS system available to LIFT riders to tell where the bus is at this time.

The humorous part was when they were taking me from home to my destination and they took the “great circle route.” I remember going from my home, right past PCC (my destination) and all the way to Lake Grove to pick up another PCC student. The drivers try to follow pre-arranged pickup routes that don’t always make sense in the field.

If I had to give advice to someone learning to use the LIFT for the first time, these are things I would tell them. First, plan at least two hours ahead of, and behind your outing as there is just no guarantee that the bus (or you) will arrive on time. Trips on the LIFT system are sort of an “all day” affair.  Second, have someone available to come assist you if the bus is late or not going to come at all. Third, be ready when the bus does show up, as they only have a few minutes to wait for you, whether or not they are early or late.  And finally, learn who the Dispatchers and customer service people at LIFT are. They are generally very understanding of schedule and driver problems you have, and often they appreciate your communications with them about the service.

Weather Life and Other

Well hello readers. I know I have not been good at keeping up on posting. It has just been lacking in my mind to have thoughtful things to say.

The weather has been rather crazy as of late. Rain mostly, which I guess is good for the plants. The few days that are sunny I try to go out in it as much as possible. I have given up caring what happens now and am glad to be out of the house when I can. Like I told folks on Facebook soon enough people will be complaining that it's to hot.


 We are having another 4th of July here which promises to be a good time. Previous to this my nephew and family are coming for the weekend.  Should be fun to see them. The pool wont be open for people to swim i don't think.

Have a great weekend 

Old friends

It's always fun to find old friends and see what their lives are like now. I found two people like this that I knew as a kid. Both have CP and both are very fun and full of life. I am thankful to be reminded that I am not the only one  who sometimes feels like life is a constant struggle.

I've been out three times with these people and for once I am able to feel normal for all of the time I am out with them. And it's nice to be able to talk to them and have them understand exactly what I mean. Nothing surprises them.

I hope we can continue to be friends and hang out. I am thankful to have found old friends and to be able to continue to build a strong friendship with each of them.