I belong to various disability-related Facebook groups, as our daughter, now 33, lives with multiple disabilities. I spent many years advocating on her behalf, and on behalf of others – both families and individuals who live with disabilities. I spent many years on various boards, committees and task forces, including Five Counties Children’s Centre, Community Living Peterborough, the Catholic School Board’s SEAC, MCSS’s Making Services Work for People, the Ontario Association of Children’s Rehabilitation Services, CanChild Centre for Childhood Disability Research, and sooooo many more. I have supported systems change, and I have supported (and continue to support) change within individual families. There seems to me to be an overall chronic feeling of doom and gloom … it just never goes away!
One day, about 10 years ago now, as my health was failing and my energy was waning, and, frankly, as the lustre was wearing off my ability to make a difference, I got to the point where I had to disengage from the negativity that surrounds disability advocacy. I lost touch with some of the most important people in my life – people I absolutely love, even now … because I had to go into self-preservation mode. The chronic doom and gloom was taking a toll … to the point where I was told, “Get your affairs in order within the next six months!”
That message hit me like a Mack Truck, and lit a fire under me. I realized that the deficit-oriented perspective about our daughter, and her wants and needs, was not serving us. It was bringing us down …. it was bringing me down, and it was bringing our daughter down – it was bringing down everyone around us, by osmosis! Yes, we had finally secured some funding for our daughter, but … was it enough? Certainly not enough to support her in living into her very best life! And would there ever be enough?! Hardly!
I realized that my misplaced belief that Government would recognize our daughter’s potential and invest in it would never result in our receiving the funding we feel she needs. I realized that others are not responsible for our daughter’s success … she is responsible, along with support from us, her family. It was time for me to step up to the plate … or to step out from behind the skirts of Government!
I am so grateful for the freedom I began to feel once I stopped expecting Government to provide the funding we want and need for our daughter….once I stopped expecting others to be responsible for how our daughter would live. I stopped having a “lack mentality” (we will never get what we need), and started nurturing an “asset mentality” (we have the capacity to build what we need).
Now, our family, along with many others, are supporting one another as we build what we need, using the vehicle of Network Marketing!!! And it’s happening!!! We are not only changing families’ financial blueprints, and thus their ability to provide a financial legacy for their sons and daughters who live with disabilities, but we are also helping to transform individuals’ and families’ health, including their ability to cope with the stress that so many of us endure!!!
I am soooo grateful!! I no longer feel tied to the whims of Government and government-funded agencies, or to the whim of others who simply do not recognize the gifts that our daughter brings to her community.
Our daughter is living the life of her choosing, and I feel privileged to be helping other families who are keen to see their sons and daughters doing the same! Although it is not perfect, whose life is, this side of heaven?!!
The work we are doing, now, fires me up!!! It energizes me!!! Lives are being transformed!!! Where, before, all I saw was a big, black tunnel with no light at the end, a vortex sucking me into a dark abyss, now, I see possibility, positivity and light! Oh, how amazing it feels to be part of making AWESOME happen in another family’s life!!!
We still have so much work to do, including my latest passion for nurturing a community of supporters who have the skill and passion for supporting people in living into their authentic and fullest potential, in community, outside of programs and agency support and inadequate Government funding! And I’m up for doing that work, since it is positive, and asset-based, and uplifting, and life-transforming … for supporters, as well as for the people they support, their families, and the community at large!
I would be remiss if I did not also add that I am looking for other families who are seriously looking for a vehicle to support their building of a financial legacy for their sons and daughters who live with disabilities, and who are open to hearing about another way. What we are doing is definitely not for everyone – I would say, though, that it is for those who are used to questioning the status quo, looking waaaayyy outside the box, linking arms with other like-minded people, and working with a servant heart for the betterment of self and others! Please contact me if you want to hear about what our family and so many others are doing!