MONTREAL -- I recently passed the 45-year mark of living as a disabled person.

I've always tried to be as independent as possible, asking for the minimum, and striving to be a contributing member of society.

I think I've done pretty well to date. I'm a C5-6-7 tetraplegic, and I live in my own condo, I still work at age 65, I drive, pay my taxes, give back where I can, say please and thank you, do my own shopping, cooking and cleaning.

I do require services from my local CLSC twice a day, about an hour in the morning and 30 minutes in the evening. I don't feel bad about this, because I know I truly need it and that I could ask for more but choose not to.

I learned early on that things weren't going to be handed to me just because I'm disabled.

I knew that I wanted to be able to enjoy the things in life that most could, and this meant giving everything that was required and more.

It meant that there would be times where I would need to fight where I shouldn't normally have to, but I accepted this and tried to fight the good fight.

But now I'm facing a fight where the rules aren't fair.

I'm having difficulty getting the minimum services that I require and have a right to.

When I present my arguments, the ones that clearly explain my needs to live safely, they aren’t good enough. My CLSC is struggling, as many are.

Staff are exhausted, frustrated, taking time for sick leave, and many have just lost interest in what brought them to the ‘helping profession’.

One person reminded me of when she could take the time on her daily visits when she could ask her patients how they were doing and really listen to the answer.

Now the mentality is to get in, do the service and get on to the next client. The purpose of the CLSC in the view of many is to care for those they provide services to. Now it has become ‘do what you need and move on’.

When I fight to get my one shower a week, I’m told that a sponge bath in bed is the same as a shower, 'except for the sensation'. Really?

When I explain that sending an agency to help me in to bed at night instead of my regular CLSC worker has always ended up with me arguing with the agency person that I can't go to bed at 7:30 p.m. instead of 10 p.m. -- that I can't spend 11 hours in bed without causing pressure sores -- it doesn't matter. I’m told that they will continue sending the agency.

I've always been willing to fight for my rights, hell, I work helping others to do the same thing. I have never in 45 years been made to feel so diminished as a human.

How do I fight a fight where the person who makes the final decision has a different view of what is more important? I understand that there are many constraints in these times, but this doesn’t make sense. 

What is happening leaves so many of us feeling as if we have no rights, no value to this society. Someone, please tell me it isn’t true, please show me it isn’t true.  

- Jacques Comeau is an integration counsellor at MEMO-Quebec. He sent this letter to Quebec Premier Francois Legault and his Marquette MNA Enrico Ciccone, his local MNA.