Some Thoughts On Advocacy

Welcome October… 

Every year, I say, this October I’ll finally get around to writing a series of posts around disability, it’s my one month to do so because October is National Disability Awareness Month and National Disability Employment Awareness Month. Sometimes, I may do a post or two in July, another important month in the disability community with the signing of the Americans with Disabilities Act, and October is also my birthday month and as such (not that I need an excuse, it’s my site I can do what I like) but I consider it one month out of the year to bring needed attention to disability issues and also because I work with many transition-age youths, to take a moment to talk to their parents and both encourage and assist them with these posts. Though I mention parents, 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 don’t focus a lot on disability, 1. because of my faith, the more I can write about it, the more I could just seek to handle it. And 2. My focus in my online persona/author-life will always be my fiction and I think it’s important to keep solid on my work of writing fiction, publishing, marketing and providing support and instruction for aspiring writers. But that does not mean I can’t depart just a little for an important part of life that makes me who I am. AND, working a full-time job in disability leaves plenty of time to be bogged down with the issues and the constant fight and struggle for inclusion and equality so that’s my story.

Allow me this month to impart some observations and ideas on part of my life: disability. Please enjoy the Series with the first this Wednesday: Some Thoughts of Advocacy – and why it’s so important that we always impart advocacy to our children

Take Them with YOU – I’m always talking about 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, that’s up to you as a parent, (personally depending on their disability- I’m comfortable with age 8 and up for short meetings)  but 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 a stigma. 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.

I too am sometimes embarrassed by the way people act and I’m often meeting with them 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 (my Mom says it’s in my head) and in 2017 people seem to still stare and all I think is: 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. 

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) 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 they will learn.  THEY ARE PAYING ATTENTION 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… Alas, I make myself speak up because for one, I like watching Gayle and Charlie and Norah in the morning as I get ready for my day and what they depict often produces a commentary from her, then my side eye twitches, (then, of course, I miss Gayle and Charlie and Nora because we start talking- and when we start talking (thank God for DVR) in that lies an opportunity and I feel compelled to take time to explain and educate and regardless of what happens after, whether erroneous ideals remain, I gave perspective on whatever the news of the day was, and whatever her response may be, I have to let it go and realize that I can’t control everything (despite countless attempts). LOL 😃  Furthermore, I do not ever fault them because their upbringing brings out their outlook on life and their (maddening) response. The only thing I can do toward that, is to talk and educate and tell my own experience and if that has no impact, it’s okay, we agree to peacefully disagree on subjects.  

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!


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