Garner Solutions

This originally appeared on my fiction author website at http://www.TraceeGarner.com for National Disability Awareness Month and National Disability Employment Awareness Month, which is in October each year. I’ve updated some original thoughts to bring the post current.

Because I work with many transition-age youths and their parents, I’m taking a moment to talk to parents specifically and both encourage and assist them through this series of posts. Though I mention parents specifically, full disclosure that I’m not a parent, I am a self-advocate and a larger advocate for countless others so this information is also relevant to self-advocates. I have also however, had to help numerous people with disabilities who parents either checked out of their lives, died or were simply absent for a myriad of reasons and many who were present but didn’t see fit to assist their children with the tools I’m going to speak out. It’s in those instances, that I’ve had to be a type of parent for them getting through many life issues over the course of many years of their life.

There are a number of ways however, I see parents omit their children in the day to day advocacy they do. IF you do all of these things below, AWESOME! YOU are on the fast track to developing a stellar advocate and more importantly, an advocate that has the tools to speak up for themselves long after you’re gone.

TAKE THEM WITH YOU – In other posts you may or may not, have seen my constant reference to my parent’s influence because I watched them and I’m amazed at how much their early advocacy influenced my ability to speak up for myself. Whatever age you feel appropriate, I say the earlier the better but that’s up to you as a parent, however, at some point, you need to include your children with disabilities in your advocacy process and efforts. The more we keep children home from meetings and public hearings and we believe that nothing will influence them, the more you promote the same societal stigmas that discourage inclusive practices.

Yes, I realize some children with disabilities have behavioral issues and this can be problematic but not all of them do and this can’t be everyone’s excuse. We as a society often already lack tolerance when we are around certain kinds of folks and to reduce that we need to be out in the forefront.  The other thing you have to ask yourself, WHO does this really make “feel bad”? Is this about your child and his/her feelings (more often than not, they are completely unaware) or is this about your own feelings of embarrassment or judgment you may feel by bringing them. It’s okay to admit this so be honest. The world can be cruel.

We all can have embarrassing moments, I may be meeting with someone in a public setting, there may be outbursts and triggers that set off frustration for some of my clients and they may not know how to handle that frustration and even anger, properly, but it doesn’t deter me. I can even sometimes have embarrassment about my own getting out. I use a wheelchair, I feel I sit funny or crooked, your child may have these same fears, people stare all the time. I keep thinking: Surely, there’s enough of us (people with disabilities) out and about in today’s society for you to have seen an accessible van already. But alas perhaps there isn’t. Idk. But because of that, we need to become visible and no staring will never go away likely but our ability to handle it, smile and be gracious must be a constant. 

And note, there is a fine line between trying to educate and help them learn versus a type of exploitation that goes on (and some parents are guilty of this – Note I see this with younger generation of parents than I do with older generations of parents and I’m on the fence about it being good or bad but certainly having both good and bad issues) but I believe and hope that the exploitation usually happens more with agencies and not individual parents advocating for their child (in the majority). Sadly, some parents are using their child’s issues whether severe or trumped up to gain favor and access to services that they may not be entitled to. I’m not talking about those kinds of people. 

I’m saying to include and to be present is the only way others can learn.  Your child is paying more attention than you think and IF THEY ARE PRESENT AND one day they will have to speak up for themselves and you can help them, little by little, (and more importantly, repetitively) to feel empowered to do so. 

HEAR AND HELP THEM PRACTICE – help them write something, let them try, if they can only do one sentence from it at the next Board of Supervisors meeting well that just further drives home your point for protections, supports and services needed in the community and helps show a very real issue, but it also helps build their confidence and they get an awesome opportunity to be a part of the entire process and not just hear about it once you get home.

TAKE TIME TO EDUCATE THOSE AROUND YOU – how many of your neighbors and church friends are aware of the daily struggles you have to go through to ensure the long-term care, feeding and support of little Johnny and Suzie? We can no longer afford to do this on our own. We’re suffering too much and the need and the impact we need to make – the stakes are too high. We need everyone. 

Depending on your response to who else is available and understands what Johnny and Suzie have to go through, the answer is either wonderful or a complete shame. In the last year, we have seen how much rallying we’ve had to do to keep our basic protections in place and if these people were already educated about the disability experience, we wouldn’t have to work so hard. I realize there is a certain level of pride that comes with handling a situation on your own, I do that all the time and usually am very tired, but when you don’t share, you’re only hurting yourself. Those that don’t know about the situations and fights we endure remain ignorant. Granted, even after telling them, so many choose to still remain ignorant but at least you told them at all. In times of need, you’ll have a reserve of people who “get it”. Isn’t that what we all want, someone who gets it, gets us and our individual fights and advocacy efforts that tire us throughout the life of our child or other loved one or as self-advocates,  and all we fighting for is the same opportunity that everyone else has, to be included, to get a fair opportunity and to shine with the best of their abilities? I’m going to say something candid, at times I don’t want to educate the 70+ year-old woman that assist me (my long-time caregiver of 10+ years). Do you know how hard it is to come by a caregiver for any amount of time, ten years in caregiving might as well be forever. She is a godsend and I love her dearly and pray for her to last as long as I do. (I have a secret bet of which one of us is going to kick the bucket first – her being 70+ and my being, well you know).  At the beginning of my day with her, I’m just trying to get dressed and make sure I smell good before I leave out the door on my way to work or to my side hustle, a book -signing or speaking engagement and hope everything is in order with my accessible vehicle and that I can be on my way and avoid any hazard on my route.

Education? Well, that is NOT part of our respective job descriptions. She assists me, I get going, she leaves, I pay her. Those are our only agreed upon commitments to one another. But regardless of how she feels at the end of my imparting information, education and personal experience with this or that, I can’t worry about that, I’m annoyed at some statements and beliefs that remain after I’m done, I’m especially annoyed how they fail to realize that a portion of Medicaid pays her salary and yet she can’t make the correlation of losing it if were to come to that, or that #DACA recipients supply so much needed care to those that folks like me, already have slim pickings because this line of home health care work isn’t glamorous and doesn’t pay well. Further more, we seem to think that whites/blacks are sitting around waiting for these types of jobs. Hate to burst your bubble. That is not the case.

EDUCATE THE VERY ONES YOU DON’T WANT TO EDUCATE… That would the blatantly ignorant, the bigot, the one that all hope seems lost on what they will do to support people with disabilities… I get, we want to take only the ones who at least seem interested and we’ll always have resisters to inclusive practices for people with disabilities but I can’t give certain people a pass. I have to remain an advocate, constantly letting the powers that be know how and why their rhetoric, the antiquated laws, and so much more, offends myself and people I represent. I’ve learned that people don’t get it on the first or even 100th hearing of your advocacy spiel but let them live a little longer, age a little bit, lose that coveted election seat, take care of an aging parent, deal with their own typically functioning children through their bouts of adversity and feel helpless, and all of these things will help them understand and that comes through experience, through living. Yes, it’s sad that some of these occurrences have to come about as a result of the life moments I mentioned above, but it’s the natural cycle of life, it’s inevitable, it’s no ones fault AND it will have the power to change hearts and minds. When the change comes, you don’t want to have ceased your education, one more story, one more testimonial can get you closer to your goal. You can’t control everything (despite countless attempts). LOL  

TAKE OTHERS WITH YOU – those same folks that I said to educate around you, take them to a hearing, a venue where you’ll make public comment and let them see and observe the process. One day they may be emboldened to speak when you are tired and worn out or having a bad day and they will be that much more educated on exactly what we are all fighting for. 

FOCUS ON WHAT YOU HAVE ACCOMPLISHED –  Don’t beat yourself up about all that you did not accomplish (yet). There was a time when I was doing national advocacy. I’ve been on the same stage with Martin Luther King, III, and Judy Heumann and I likely could have kept going to continue to be a national voice and the needs abound. I need to be a national voice, international voice and a local and state voice all at this time. Sometimes I still have the opportunity to say something on a larger scale but my main focus has been here in my front and backyard. Many gains have been made in my area toward the inclusion of people with disabilities and that’s fine. You have to make a decision to control and impact wherever you are and be all right with that. I don’t miss getting up early for certain meetings, I have a ton of night meetings right here that take just as much time that accomplishes just as much for local citizens with disabilities. Don’t let anyone ever tell you-you are not doing your part, if you can only focus on the advocacy efforts of your own child, that’s exhausting enough and still makes an impact. You have no idea who will ride on your coattails and some of the gains you make may not be realized for some time. Do whatever you can do around changing the life of one or many, planting seeds of change in your corner garden and make that as beautifully accessible and inclusive as it can be and let that be enough. 

The journey continues. Onward!