What It's Like Part Two (Acceptance)

   

Photo credit- smbrokowski6 @ morguefile.com
This part, this is the genuinely difficult part. All of the physical complications of having a disability pale in comparison to the emotional issues surrounding it. I've always intellectually known I had a disability but 99.999% of the time I don't think about it. What color eyes do you have? How often do you think about your eye color?  The difference is eye color doesn't customarily impede regular activities.  In my case, that is my mindset regarding my physical self and its differences from that of many others. The adaptations I have and have had to make are entirely second nature to me. Sometimes when planning to meet up with friends I'll even forget to ask whether entrances have curb cuts or stairs.
Sadly, many businesses don't realize that there are actual technical standards for wheelchair accessibility and many still fall short. Such standards are known to be part of Universal Design. Universal Design is an integral part of the Americans with Disabilities Act of 1990. It's a form of design that allows something to used by as many people as possible. Not following the ADA is against the law, it isn't just "mean" or "unfair".
Beyond accessibility, there are issues of acceptance, inclusion, ignorance, equality, friendship, illness, loss, love, and relationships. The issues I listed here barely scratch the surface of my experience as someone with a disability. Everyone experiences these things but sometimes when you have a disability, you can be forced to deal with some of them when you're very young. I'm going to start with acceptance and inclusion. They go hand-in-hand and are the basis for relationships.

 Not being accepted by one's peers can be painful, especially when you're young. My first memory of non-acceptance occurred when I was about five years old. I wanted to join a group of children playing at recess. I barely got past "hello" before being scowled at and greeted with "you're weird, you can't play with us". Incidents like this are not uncommon regardless of circumstance. When someone has a disability though, the immaturity and ignorance directed at you doesn't always end with age. Cruelty and hatred can carry on well past childhood. People tend to make fun and act hatefully toward things they don't understand or to make themselves feel better about their own life.

The most frustrating thing about this, in today's world accurate information can be made available in seconds. Acceptance can be a wonderful thing but it has to come from within first. Please remember that whatever it is that makes you different can be an awestriking and grand thing. Who you are is who you were meant to be. You are worthy of kindness, respect, and love. 

Inclusion is an important thing and can be a catalyst for years-long relationships. I believe everyone deserves a chance to get to know someone or try something new. In my case though if I'm not wanted somewhere I would rather take part in another activity-solo or otherwise. I  want to be included but not simply because I have a disability and someone feels they have meet some moral quota. I want to be included based on who I am as a person. Being friends with someone with a disability can require a lot of patience and understanding. We generally move slower than most folks and a lot of daily living activities can take longer than even we expect on any given day.

When a lot of people look at me they see this beacon of courage and hope. The truth is I get scared about the future, just like everyone else. I get impatient with myself, others,and a lot of the processes I have to go through just to get the equipment and help I need. The previously mentioned ignorance often finds me on otherwise lovely days and tries to ruin my fun. I do my best not to let it, but don't always win. Sometimes things get heavy because at the end of the day it can feel like wheels are being spun but I'm going nowhere. On the plus side, I'm funny, a good listener, and an excellent advocate for myself and others, and an extremely loyal friend. Just don't steal my popcorn at the movies, that's annoying, just ask I'll share! :) Thanks for reading. See you soon!

Jennifer

What It's Like: Part One (Physically)

      Today's entry could have a number of titles. The most apt title, however, is the one I gave it. I'm going to do my best to explain to you what it's like to have cerebral palsy. I can only speak from my own experience. CP's effects vary from person-to-person. My own experience has changed as I've aged.

My disability causes my muscles to be spastic. They are constantly tense and my movements can be slow and stiff. When I say "constant", I mean that literally. There's no time during my waking hours where some or all of my muscles aren't tense. This isn't fun or comfortable, but it's my normal. The discomfort can change to pain quickly and often does. Exercise and warmth are the only non-medicinal remedies for this pain. Spasticity can lead to contractures. Contractures are the permanent distortion of joints caused by shortened muscles. They can impair function if not treated with physical and other therapies.

The best way to describe having spastic CP is that is very much like something out of a children's book. I feel like my body is made of rubber bands. My muscles are tense all the time and when stretched they remain tight until they're fatigued. Unfortunately, working out doesn't keep spasms and tension away for as long as the amount of energy exerted would make one think.

 It'll all return home like an obnoxious neighbor four to five hours later. There are no bodily superpowers that you get with this thing either, I wish for that all too brief time I could gain some height. I've always been very short. That's not much fun. Ohhh better yet I wish it'd allow me to float or fly in the air! That'd be fun and transportation would be  a  breeze! No dice. Damn. PT bends you so much you'd think you were auditioning for some sort of live-action Stretch Armstrong play. Those of you who are too young to know what I'm talking about may now Google Stretch Armstrong or 80s toys!

In the end, I wouldn't trade the vast majority of my physical troubles for anything. I have known people who have dealt with and are dealing with far more difficult challenges. I have been given seemingly simple gifts that were never expected to be given to me. Despite a life of many difficulties both current and former, I am grateful. Everyone deals with something. Everyone. I believe that with hard work, love, faith(in a high power, yourself, or both), and a lot can be accomplished. Thank you for joining me. See you soon! 💓

Jen

Photo credit: Skalunda via Morguefile.com

Hello :)

Hello Everyone,

My name is Jennifer. I’m 40-years-old. I’m trained as a public relations professional but have interests in several areas. I’m a writer, advocate, improviser, and singer. Some of this, I have left and returned to, for various reasons over the last of twenty or so years.

There are other facts about me that you will learn as this blog progresses. For this first entry though, I thought I would introduce myself as a person and explain why I wanted to reboot this blog. My goals in starting this blog are not only to make people more aware regarding disability issues, it is to encourage younger people with or without disabilities to be more active in their own lives and communities.

By more active, I mean in any and every way possible, especially in person. This is particularly true for those of us with disabilities, I believe the more we’re seen the more we are heard.  I’m well aware of the misconceptions relating to disability, however, I feel this provides us with more reasons to live loudly in order to be heard and seen. Your interests don’t need to lie in the arts. If you are interested in conservation, why not join a local environment group? I’m a huge believer in action and participation.

Yes, I have cerebral palsy which is a group of disorders that influence how an individual’s brain functions in relation to movement. In some cases, it can affect speech, cognitive function, CP is a form of brain damage. It can occur before, during, and after birth. There are multiple types and there is no cure. If you would like more information please visit The Mayo Clinic Website.

In my case, I need help with daily personal care tasks, transportation, and household chores.  Throughout my required education, I was in general education classes. I utilized special education for personal care assistance and accommodations needed due to the physical limits of my disability.

This blog will largely operate as a collection of stories from my own life, as I remember them, both past and present. It may not always touch base with a disability-related connection, because I consider myself a person first and foremost. I hope it spreads knowledge, hope, and entertains. Thank you for reading this first entry. Please feel free to share.  I’ll “see” you soon!