I recently turned 40 years old. There’s a lot to look back on. There’s so much that I have accomplished:

Two college certificates- Business Admin & Applied counselling

Becoming a freelance journalist

Becoming an advocate

Becoming a hockey coach

Becoming a business partner

Becoming a writer & author

Becoming a fundraising expert

Volunteering on many boards

All of this sounds wonderful. You might feel inspired and think, how can a person with a physical disability achieve all of this?

When I first started to feel awesome was back in my fundraising days. Society was impressed with what I was doing, which overall was a good feeling. Better yet, was knowing that I was improving myself, at the same time I was giving back to wonderful organizations. Also, I was getting in shape. This was helping slowly shape my being.

During my elementary and high school years, I just did my best to hide in the shadows and exist.

College was an okay part of my life. Looking back, it is also, one of the biggest wastes and missed opportunities. I was so shy and unsure of myself, that even the smallest task was the biggest hurdle, I was just try to survive. Going to college then straight back home, made up my days. For excitement on the weekends, I would go up and down the hallways of my apartment building. There were plenty of times, when I would be asked to go out- go out for drinks or movies. I would come up with an excuse to stay home. This was the first time that I had the chance to be truly on my own. Instead of embracing it and finding out more about who I was, I wasted it.

I was guilty of thinking that just because I had CP, that everything was going to work out. A fast-food restaurant owner, a town councilor, a big-time author, a hockey scout, run for government office. Being Mr. popular and being well off finically were just some of my big ideas that I thought were for sure going to happen. 

The hard truth is it did not work out. Main reason was, I did not want to put in the effort and wanted everything to be handed to me. Everything I wanted to do, was just supposed to appear and be a success instantly. The complete opposite happened. Every door I tried to go through, people slammed it shut. I was turned down for bank loans, when running in municipal elections, I was not taken seriously as a legitimate candidate. My speech and look held me back.

Thinking that everyone was going to want to do home care with me, was misplayed on my part. Being very popular in my small town I thought for sure, that there was going to be people lined up around the block to work with me. Finding staff is only going to continue to be a big issue for the rest of my life. Did I and try to work harder? No. instead, I got really upset, not only with myself but with my disability as well.

This is where life started to spin out of control. I changed who I really was. Before this, I was a very quiet person, that did not like drawing attention to myself. I totally lost my passion for life and became a heavy drinker, who did drugs, adopted a very unhealthy diet. Turning into a real jerk who partied, gave me a large group of friends, I thought life was awesome. I was “cool.” Along the way, my physical and health took a beating. Drugs and booze took over. I thought waking up most mornings feeling awful, was normal. It took me a long while, but I got out of it. Cleaning myself up, all of my so called “friends” disappeared. Some of them I have not seen or even talked to for 10 years. I was just used for my booze and a place to party. 

Once I changed my lifestyle, all the partying and hanging out stopped. As I sat alone in my apartment feeling unhealthy and wondering where it all went wrong, it came to me that I was the only one capable of a more fulfilling life.

Why am I saying this?

Today, life is nowhere where I need or want it to be. However, I am proud of who I am and what I have become. If you want something in life, you might need to go through the dark, to reach the light.

Life is yours. Always shape your future best you can.

When you have Cerebral Palsy, I continually get asked the question “What have you been keeping busy at, lately?  Being in a powerchair and having a speech impairment, those who do not know me well, except me to say “oh not much.”  Over time, I have learned to transform my frustrations into teachings.  Assuming, is a life hack which we are all guilty of at some point-me included, because it is easy.

The following is not written in anger.  The goal is to point out some aspects of my life, that the audience may have not thought of in the past.

Waking up early is not easy but has to be done, I have to attend a meeting a two-hour long meeting, I rush home because my helper is leaving soon.  After having a quick bite to eat. I have to go grocery shopping. Coming home, thoughts of “my newest article needs to be done” fill my mind.  As the article is starting to take shape, the phone rings. It’s the board co-chair, asking if I have time for a quick meeting this evening, because something has come up with one of the volunteer organizations that I help out. The clock is now pointed towards late afternoon. Stress has started to overtake. Due to the fact that, my helper is only here for certain amount of time, now I must juggle. Now I have to prioritize what is most needed.  Eating supper and exercising are going to be put on the back burner.  Quickly, I wash up and use the washroom and off to the meeting. Instead of having an hour to get my routine done, I have twenty minutes.  

Arriving back home, there’s nobody here to help me. To take my mind off my filling bladder, exercising is on tap.  I get my daily workout in which is a great feeling. Then I have to complete notes and emails from the evening meeting. With Willpower Media, there are always edits, emails, marketing & promotion to do. The fact that I am an expanding disability advocate, life gets down right hectic. Being a business owner and rural disability advocate, I send a lot of emails and texts. Sending emails a texts, might not sound like something that would take lot of time, but because I type with one finger and email and social media is my main source of communication, it does. Lining up meetings, answering emails and direct messages, lining up events, managing my website, are a few of the aspects that keep me and my advocating growing.  Not to mention the, duties that come with running a business obligation and speaking engagements on-stop. At present, I cannot have a regular “9-5 job.”  This does not mean that my life is not full.

After a late-night supper, it’s back to the computer to complete my article. The clock is screaming 11:45PM, “GO TO BED!” Morning is going to come quick. I have new staff ordination tomorrow has my mind racing. Ordinations for new staff can be intriguing yet nerve racking.   This person does not know me or my routine. It can be difficult to be compassionate and at the same time finding the easiest way to connect with them. 

Checking the email one last time, the helper that supposed to come get me out of bed in the morning has emailed saying they’re sick and won’t be able to make it. This has been an average day that went well.  Even sitting for ¾ of the day and laying down for the other ¼, I’ve been busy.

It does not matter how, just as long as abled or disabled, as long as people can all go to bed knowing that we pushed our lives to their fullest amount of greatness possible.

Busyness should not be measured in steps, rather in personal productivity!

Alex Lytwyn

This is going to be a very trying and long firefighting season for all involved.  My heart goes out to all who’s affected.  

Just like the air quality, my life has become truly suffocating.

Having a physical disability and having to depend on help, my day starts like this. My help comes in. I get out of bed, get dressed, washup, get a coffee and the day continues on.  This particular day, is off to a bit of a different start, however. It is easy to see that I’m truly struggling, but why?

As soon as I try to take a breath, I cannot. All that happens, is I let out a dry and wheezy type cough.  With my anxiety raising quickly, I do the only thing I can and stay calm.  This is not an easy thing to do as, at the best of times it is not easy for me to take a breath.  With my disability, breathing is something that I will never be able to take for granted.  Before I had went to bed, it was calm and cool. I had left the window open.  It is important that I try and stay cool while in bed because I have very limited movement. What has happened is, my room to be covered in a thick smokey haze   A very scary feeling.  What the heck do I do? My cough will not stop and my breathing is getting much more difficult to accomplish.

My helper comes into my room and see that, I’m very sweaty, in pain, breathing heavily and coughing. My face is very flushed. Quickly, my helper gives me my inhaler for the wheezing and a cough lozenge to soothe my dry hacking cough.

I’m left alone a night with no way to close a window or do anything else that might to be done.    I have severe asthma; to combat this, I use an inhaler.  Also, a dry cough accompanies me, to deal with this cough candies or cough syrup are needed. Being alone for 12 hours a day, if nobody is here to help me with anything at all-especially medication, life is that much more difficult.  

Today, looking at and watching the news, the province likes to say that they are doing everything they can, to keep people as safe as possible.  However, something seems to be missing from the news headlines.  That is the fact that, everyone who needs help from the fires and smoke are not getting help and are being litterly left gasping for help.

Being ignored, is something that we the strictly disabled physically disabled community have become used to but this must change. Why doesn’t the province help all its vulnerable people, and not just some of them?  Especially during a natural disaster.

I’m not asking to be evacuated, as there’s no fires that are close by.  In saying that, heavy smoke has been filling my community every day.

What I need is 24-hour home care funding (in my home, where I’m currently living independently.)  This would allow me to live free and minimize my life’s many hardships. The province of Manitoba, could go a long way in being a leader in Canada, if they would recognize all venerable persons. There are lot of different types of valuable people, in the province.

When it comes to having the power to control a person’s quality of life, everyone should be helped and not left in the smoke and left to struggle for every breathe.  

 .

Alex Lytwyn

According to the government of Canada, provinces can be discriminatory, due to an individual’s disability.

This is the case when it comes to disabilities in Manitoba. If an individual is covered under the Adults Living with an Intellectual Disability Act. These people get the following- 24-hour care, housing and access to different types of programming. They get to live life on their own terms.

Me, not so much-I cannot live my life, to its full potential. Why? The Manitoba government discriminates against its strictly physically disabled citizens. If a person has an IQ over 70 and a physical disability they are left to battle through different elements. 

Only having staff with me for parts of the day, everything is so compact and stressful. Anything and everything that I have to get done during the day is done at the exact same time, every day. When I have no staff here with me, I cannot eat, drink use the washroom, take meds or go outside. There’s no way for me to have a job or participate in society, to its fullest extent. 

Things tend to really escalate, when I am not feeling well. Say I have a sore throat and staff are here, I have a soothing cup of tea. For the short time I am at ease. Staff have now left. As time goes by, I need to use the washroom. Doing my best to hang on, only lasts for so long. After about an hour of holding on, I cannot do it anymore. What an awful feeling. As the pee covers my sheets, I cannot help but look at the clock. 2:35AM. Just great, my help is not going to be here for hours. Nothing left to do but weep and wait.

The dry cough, that I had earlier in the day has returned. It gets so bad that I cannot for the life of me, stop coughing. To the point where I end up throwing up all over myself. Now I am covered in my own excrement’s. My goal at the moment, is not to choke.

If the night cannot get any worse, all of a sudden, I hear a knock at the door. It is a person who had too much to drink. As they are screaming obscenities and pounding on the door, I cannot help but think to myself “what the hell am I to do, if they get in?”

During a winter storm, my front door blew open. I wake up to the police in my bedroom, asking me if I was okay. What if it was not, the police that walked into my house?

I am being neglected. My physical health fall to the point, where I’m starting to fail. The people in control, really do not seem to care. Why has the government of Manitoba, left me without equality, dignity and respect? My mental health is declining rapidly. Having to control every aspect has caused me to have negative emotions and very high anxiety. Physically, I have started to lose control of my weight. Strictly because, I do not have staff with me enough, to have the healthy diet that I want and need.

Today, why should it make a difference if a person has an intellectual disability or not. The fact of the matter is, that if a person has a disability and they need help living, they should get it. Its 2025, you would think government discrimination against its own citizens, should not exist but it does.

At present the province of Manitoba has a pilot project. The purpose of the project is to find gaps in an individuals disabled, related needs. The project, was only for those in Winnipeg Health Authority. What about the rest of us?

Human rights define what we are ALL entitled to a life of equality, dignity, respect, and a life free from discrimination. So why doesn’t this pertain to physically disabled persons?

Everything comes down to money. However, can a price really be put on life equality?