macular degeneration, macular, diagnosis David and Goliath – My Macular Degeneration Journey/Journal

David and Goliath

This week I am a bit heady with victory. David took on Goliath and won! Remember I told you I felt disrespected by a major publishing house? I knew they were required by law to help me out but yet I was getting no satisfaction.

I waited about two weeks and, honey, I was done waiting. I stopped calling customer service in Podunk, USA and called the corporate offices on Manhattan. We’re movin’ on up!

Gutsy? Yeah, I am not a shrinking violet. Especially true when I know I am right. And I was RIGHT.

Self advocacy by the handicapped is another hot topic. When I first met with my habilitation person, she asked me what I was doing to self-advocate. I wasn’t sure how to answer. I am an only child; I have been advocating for me my entire life. Much of what I do is asking for what I need and, frankly, wholeheartedly expecting to get it! I have always been a tad spoiled although I try not to be obnoxious about it. For a more unbiased opinion on the obnoxious bit, ask someone who knows me.

In simplest terms, self-advocacy is standing up for yourself. It involves expressing your own wants and interests in a way that you will be listened to and get what you want. It does not include being obnoxious about it.

Expressing wants and interests in a way that you can get what you want without embarrassing yourself is a skill. Since it is a skill, it can be learned and improved upon. Many people don’t think they can learn or need to learn the skill but, let me tell you, their lives might be a lot better if they did.

So, how did I accomplish my goal? First of all, I was fair. I had a legitimate gripe, but my gripe was not with the people I was now speaking with. In all fairness, these people were trying to help me and it made zero sense for me to yell or scream at them. I also used fairness by admitting a legitimate oversight was possible. Mistakes happen. Let us find it and fix it together.

I did not apologize for my need or for wanting them to do what they were legally obligated to do. Too many apologizes are signs of weakness and uncertainty about your stance. Groveling saps your power.

Do NOT grovel if you expect to win the battle.

The third point was my request was valid and moral. My heart was pure….at least in my primary goal. Maybe not so much in my desire to shove their noses in the Chafee amendment and the effective communication chapter of ADA. Not perfect here. In my original goal I was not trying to get something for nothing. I was not out to cheat them or to make them give me something I did not deserve. I stuck to my values.

The last point to address here is honesty and truthfulness. I did not exaggerate the problems I had been having, the way I felt or how much I needed accessible copies of their printed materials.

All together these four points make up the FAST skills from DBT. FAST skills were put together to help you get what you want without giving up your self-respect. No one can steal your self respect but you can give it away by being rude or dishonest.

Another thing I did to get what was right was be respectful and appreciative. By being respectful and appreciative, I set things up so the people helping me felt good about helping me. It became a win win situation. No one loses in a situation like that.

So now I have permission to alter their materials and put them in an accessible form. One more step towards my goal. I wonder if David did a happy dance when things went right for him?

Next: WINTER IS COMING

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