The Episodic Challenges of Living with HIV &

Depression

By Raymond B

Overview

• My Episodic Disability

• My Challenges

• Employment & Income Support Barriers

• Some Possible Solutions

My Episodic Disability

• 1987, 32, working as a Chef in a fine French cuisine restaurant, great shape… then - diagnosed with AIDS!

• In less than three weeks I had to quit my job due to Interferon treatment and its very dibilitating side effects.

• One year later I was on Welfare and Régie des Rentes du Québec Disability Plan (RRQ). I have never had paid “work” since.

• HIV is an episodic disability, chronic, lasts a lifetime

My Challenges

• Unpredictability and variability of HIV itself as well as the side effects of the medication

• Employment challenges – including inability to work regular 40 hour week on ongoing basis

• Income-related challenges – including lack of financial support when unable to work at all or only able to work part-time

• Affordable housing

• part-time university for 4 years with Loan and Bursary program for disabled students

• one year full-time placement, experienced a burn-out and I did not complete my degree.

• volunteer since, now and then in different ASOs, whenever my health and level of energy were good enough to do so.

• affordable city housing took close to 8 years

Why paid work doesn’t work for me

Risk losing every little tiny bit of security and stability I managed to get to cope with my life, even though it may not seem much to lose.

If I worked and lost my job because of my health condition, I would lose the money anyway and worse, I would have to pay more for my affordable housing rent the following year!

• a skilled and dedicated volunteer in my community, I contribute to society and meet people.

• never been afraid to work hard when I had to.

• But, the unpredictable nature of my illness would not allow for a steady, reliable flow of income unless I completely disengage from the ‘paid workforce’.

• The stability of the social support and benefits, although small, allows me to ‘work’ to my potential in a volunteer capacity without risking losing those needed benefits.

What would I like to see happen?

Being able to engage in paid work, work to my potential, and retain the security and benefits I presently have whether or not in the paid work force.

I support your collective efforts to work today toward those goals.

Thank you!