03/23/2014 09:03 EDT | Updated 05/23/2014 05:59 EDT

Mental Health: There Should Be No Such Thing as a Free Spech

If you haven't figured it out by reading my blog, I love being a mental health advocate. I've had the opportunities to meet and be interviewed by some of my heroes (I'm talking to you Steve Paikin) but most importantly I regularly have the chance to meet others living with mental illness. It is my hope that I can inspire them and continue to lead the way and move the mental health agenda forward.

I can't tell you how excited I was when I got my first phone call asking to sit on a committee about youth mental health. At that time I was 14. Not only did it give me a chance to share my story and my views, it also got me out of my group home for a weekend every month.

It is not uncommon for organizations to hire consultants or outsiders to come and meet with them. Sometimes they just need advice, guidance or want to hear a different perspective. Despite having technology and search engines at our disposal many agencies find it helpful meeting with experts in person. Almost every expert I've met charges for their time; because they are providing a service. Organizations look at it as a cost of doing business.

When it comes to fundraisers or keynote speeches at conferences these same organizations will also pay the speaker along with their expenses such as travel and hospitality. Once again, that's simply another cost associated with the event.

More and more organizations are turning to people with lived experience to consult and provide them with advice. They also want these same people to speak at their fundraisers and conferences. I know I'm biased but I think the reason for this is simple: Those of us with life experience bring a richer perspective, a more organic experience simply because we've lived in the system rather than working in it. We are consumers. Think of retail: Much of what you do and things you implement are derived from the experience and feedback of customers.

I get asked to attend and speak at a minimum of two events per month. A few times throughout the year I will attend several events over an entire week. Any time off from my day job is unpaid. Yes I get two weeks of vacation every year but I prefer to use that time to do absolutely nothing. Some say that's a personal choice. I say having two weeks off every year with nothing on my agenda is essential to my mental health.

At the same time I need to make a living like the rest of the world. Any time I attend events I incur expenses. Sometimes hospitality depending on how far I'm traveling, transportation expenses and even food because I likely have to eat out when I normally wouldn't. And of course there's my time away from work and the time it takes for me to prepare my presentation.

When I first started giving speeches I didn't ask for a penny, partially because I needed to build experience but also because I didn't know money was available.

Over time organizations either offered me money or asked me what my fee was (for the record it's quite low compared to other advocates and professionals who do similar work). A minority of organizations still hold the expectation they can find people who will deliver a quality presentation, take time off of work, and incur expenses.

I shouldn't and will not pay out of my pocket to give a speech. As I have told organizations, I am not looking to profit from my speaking engagements. I am simply looking to cover my losses from taking an unpaid day off of work plus cover expenses that I am only incurring because of the speech. For the record I am a believer in volunteerism and do give a few unpaid speeches per year.

I am not writing this post out of greed. I am writing this blog on behalf of plenty of other people with life experience who want to share their story but can't afford to. Life experience is invaluable in order for the mental health agenda to move forward in this country organizations need to hear firsthand from us.

People with lived experience are experts and nobody should expect us to work or always provide our services for free.