Today, politicians get raises during periods of inflation.  Where as the common physically disabled folk, are forced to continue to suffer and live below the poverty line. I’m here to pull back the sheet and shine a light on something that society rarely talks about, or frankly wants or tries to understand.

Inflation affects me and I’m sure other physically disabled individuals, in more ways, then just money. We have all been hit with the increase to inflation. It’s not just the financial aspect that has affected me.  

Having a physical disability, my life is always in someone else’s hands.  We all have stress in our lives.  Family stuff, school, relationships, life has a way of making every day hectic.  

Looking at the clock, my days about to start.  I hear the door open and the day has started. Right off the bat, I can plainly see that my helper is not themselves today.  Me being me, I try to lighten the tense and quiet mood with a joke.  It does not land at all, and the atmosphere gets heavier. Not much to do, but just go through the routine.  As my helper is moving me around, it’s not going smoothly.  He’s still quiet, being rough with me and forgetting the routine.

As he is washing my face, there is a few deep sighs and my helper just looks so distant.  As they are pouring my coffee, he ends up spilling the coffee and dropping my cup.  He’s flushed and breathing heavy. The day is off to a rough start.

I sit down with him, after things calm down. He opens up to me and says, that with the price of inflation, the bills are piling up.  Life is full and stressful and they really do not know what do.  Sheepishly, he starts to weep.  I tell him that life will brighten up.

The next words that are spoken, shatters my heart into a million pieces.  

My helper looks at me, tells me that he so enjoys working with me.  Then he apologizes for the difficult morning.  I said no problem, thank you.  

Then he asks “Alex, can I have some more hours?” With the deepest of regrets, I say “I’d love to, but I cannot. The government only gives me so many hours to live. After a few emotional moments, we both come to a common understanding and move on with the day.

I am stressed out because I cannot help out my caregiver.  While at the same time, my quality of care is diminished.  All I’m left to do is two things, smile and continue to suffer.

The increase in inflation, has had a trickle-down effect, that very few people get to see.

Let’s hope the people up top, see how society needs to be addressed and not ignored.

Those of you who know me well, know that I advocate strongly for many causes.

When everything goes smoothly, my voice and thoughts flow, my breathing is in tune, my nose is clear and I am understood.  

I must make sure that, my image is at its best at all times. If my pants or hat are not straight, seatbelt or foot straps are showing, the battle to keep my disability from completely taking over is that much more difficult.

Holding my head straight is an aspect of my life that I really must work on.  If my head is crocket, the biggest thing that happens, is my Cerebral Palsy, takes over the conversation and my appearance is seen negatively.

Also, sometimes stuff comes out of my mouth and on to my chin.  Out of everything that I deal with, this bothers me most.  I am the only one that can deal with this issue. Having stuff on my face, can really hold me back from society seeing the true me.

Trying not to say 50 words in one breath is very important.  If I do not talk in a measured, calm tone, the words coming out of my mouth are nothing more than noise and wind.  I have to breathe slowly and just let everything flow. Sitting up straight and keeping my hands down, is key to clear speech.

With me putting weight on very easily, it is a must that I stay in shape best I can.  If I don’t, it makes it harder to breathe and this really affects my speech.  A lot of energy and effort is needed for me to get my point across. If I am heavier, I get tired that much faster.  Speaking and furthermore speaking well, can drain me both physically and mentally. 

There are plenty of days, when nothing goes according to plan and I am not understood. When this takes place, I ask is that you have some patience I’ll repeat myself, spell it out, or find some other way to get my words out. I am okay, just trying to get my words out to the best of my ability. The worst thing a person can do, is give me that fake smile and pretend to know what I am saying.  It’s always an awkward situation, when I am having a virtual or an in-person conversation.  I finish a sentence and the other person does not say anything because they have not understood what I have said and do not know that my point is complete. Why not ask me to repeat, please? It’s a lot better than silence, a stare and a smile to go along with a head nod. Whatever you do, don’t ask the person with me “What did he say?”

Speaking is not as easy as it used to be. The main factor being that, due to my lack of care, I cannot have a drink, snack or a soothing candy whenever I want. When I have one of these three things, my voice is clear and strong.

My passion for speaking and opening societies eyes, has only grown stronger   It is all worth because over the years, my ideas and voice are starting to get recognized and appreciated. It’s my hope that one day my words and thoughts, will lead to me living a much more normal life.

With all the talk of AI, I feel like a very lonely robot with no emotions.

Needing help basically with everything in life, small things can have a massive impact.

Windows really cause me frustration. When I want to open or close them after staff leave and won’t be back for hours.  Wind changes or a storm comes up, not a damn thing that can be done.

When it comes to eating, NOTHING worse than when I’m trying to eat a meal and the fork is flimsy.  Also, the food must be firm on the utensil.  Huge turnoff for me, when the food is not held properly.

It’s truly imperative that I get everything done within my time limit.  There are plenty of times when this does not happen.  My day can very quickly go into a tailspin. Say I forget to ask for a drink on the table, there’s nothing for me to do but go thirsty.  Add to that, no matter how hard I try, all life cannot be planned out.  Things are going to come up that are out of my control.

Someone phones me and I am by myself this is really difficult.  Odds are good that I cannot reach my drink during the conversation.  When this takes place, I get uptight and it is almost impossible to understand me.  So, the phone call is over before in starts. 

Company coming over is nice but at the same time it is nerve racking.  If they leave and I have no staff here, things can get interesting. Having to use the washroom and having nobody here to help me, is pretty self-explanatory.  Nothing I can do but try to not have an accident and try and hang on until help arrives.

Going uptown alone for a drive should be relaxing.  However, it can also cause havoc in my life.  A dry cough can cause me so much grief.  A drink or candy may be beside me, but they feel like two miles away.

If I have to sneeze and wipe my nose.  Nothing to do but hope people don’t think that I’m having a seizure.  My hat blows off in the wind, only thing I do is hope that someone stops to pick it up.

Not being able to move in bed really sucks too.  Being in the same position all night is tough on the body. Thirsty or hungry at night, not a darn thing that I can do about it.

 Having a physical disability, the way I look and feel is very important.  If I just, out of the blue want to wash my face or brush my teeth, this has to be timed out.  I want to go to bed early, sure, only thing is I have to stay in bed for a longer amount of time.

I have talked to people who can fix my life and they just don’t get it or care about my situation. I will never give up, but fighting for and living the most basic of lives is beyond exhausting.

Please don’t see this as complaining. This is just the way it is.  Some people say to me ‘I don’t know how you stay so positive.’  Trust me, I have my days of anxiety, stress and anger.  It would be nice to relax with a cup of tea and go pee. Instead, I am locked up and not free but I’ll continue to fight for my freedom and my rights to the little things.  

Being physically disabled in a small town, finding helpers can be a real challenge.

Over the years, I have had some pretty interesting conversations and been in the middle of some very peculiar situations. When interviewing a potential employee, I need to say the following: “When you come for orientation, I will be naked waiting in bed” and “If I am choking on my pills, don’t worry I’ll be fine.”  Surprisingly, most people still show up.

When is a good time to pull a beer from your pocket?  Maybe at a BBQ or birthday party?  I had someone pull out a beer from their hoodie pocket, as they were leaving the job interview.  Also, the individual apologized to me saying “Sorry for being late, I took to many pills.”  They might have still had a shot working with me, if they would have at least offered me a sip of the beer.

I once had an employee come to work still a little drunk from the night before.  After some pretty odd positions in my lift, we make it to the shower.  After they help me wash up, I asked them to leave me in the shower so I can soak for a bit. All seemed well, until my Zen moment was completely destroyed with a stench, not from this world. The employee was having a number “two.” My toilet is right beside the shower. What a way to wake up.

Being desperate for staff, I cannot be choosy.  Case in point when, I had to hire an individual, who basically spoke no English expect for a few words.  It sure made things interesting, especially when I have a speech impairment.

An employee once asked me, “Do you like adult movies and recreational drugs?”  Back in the day, I sure did.  Well one day, the employee brought them both over for me.  We did the recreational drugs but did not watch the movies together- that would just be weird.

One day my phone rang.  It was my employee telling me, that they have had to many drinks in the afternoon and they were too drunk to come put me to bed. However, they did say that their partner was not that drunk and he could come assist me with going to bed.  I said no that’s okay.

While showering one day the employee helping me, decided to grab the shampoo, lather up their hair, while still helping me wash up. That’s right, this person washed me up, then started washing their OWN HAIR. I really did not know what to say, except for “Hey, that’s my shampoo.”

I once told an employee that I like my beef stew chucky.  Supper was ready, I go to the table and on my plate, were large whole carrots, massive halved potatoes, to go along with pieces of beef that were bigger than my mouth.  Next meal, I was much more specific.

In saying all of this, all of my past and present staff have helped me shape my soul and left me with lasting memories. I have had, a lot of people help me out over the years. Each one of them, has their own unique story.

Today, inclusion is supposed to be at the forefront of society.  I think it’s pretty obvious, that Willpower Media is on the right but sometimes wobbly path to inclusion.