by, Renee Wood

Here is my long recap of the Synergy conference, how I first got involved and what keeps me going back.

I guess it’s no secret that one of my favorite conferences to go to is Synergy. I started going in 2016 when my soon to be friend, Steve, convinced me to accompany him for lunch. At the time, I was extremely busy with four different professional engagements on that day. One of them was a transportation Conference that an organization that I was heavily involved with was sponsoring. (I had forgotten that two other people, about a month prior, try to get me to go to this Synergy Conference in 2016. I guess I must have brushed it off and put it out of my mind since it was not going to be possible), I was already going to have to turned down two of the engagements (which I don’t remember what they were now) because of the one that was taking priority. So I get this sappy email, from this superintendent, Steve, who I didn’t know from Adam at the time, saying he chooses a different person every year to join him, and that this year my blogs really touched him, and that he would appreciate it if I would join him. Now, you have to remember, my sarcastic, sometimes judgmental, self. I am like; “Why was this important person, who doesn’t even know me, want to invite me to lunch at this conference”? Either he is really desperate for friends (which I now know for sure he is not at all – more people call him “friend” then there is sand in the desert!), or I really did impact his life somehow and owe it to him. I may be sarcastic and seem tough on the outside, but I am a marshmallow on the inside and when I think somebody needs help I am there. Sucker!

So I get there and what happens? They have this nice lunch. Then they start handing out awards and I think there was about five awards that year. So they hand out the first four awards and get to the fifth award and Steve’s up there saying that this is the most prestigious award and that they don’t give it out every year. Since he was part of organizing the conference, it was only right that he would be up there announcing the award, and the person receiving it, so my dumb ass was totally unsuspicious – I mean even though I was involved in the DD system and making changes, I really wasn’t familiar with this particular organization that put on this conference, so I had no reason to even remotely believe I would be consider for this particular award. I am listening as Steve starts reading this persons (rather long) bio. The first part I found familiar, but honestly, attending college, and advocacy from a young age, could have really been about anyone. Then he says; “This person has spent over 250 days in jail for protesting”…  My brain is like; “Who the fuck else would do that” – finally realizing it was me, I looked up and just started crying. Steve and I became good friends during that year, and have remained so after that. So I can honestly say, me and Steve’s good friendship started out with him making me cry! I guess I must have a thing for men that make me cry!

One of the things I’ve found in attending the Synergy Conference over the years, is that there is no separation between people with disabilities, and people without disabilities, especially those with a DD diagnosis. In other conferences, where people with DD are invited, they have different tracks, one for the “professionals”, and the other tracks primarily meant for people with DD. They may not have an armed guard at the door only allowing the correct people in the track, but you definitely get where you belong – unlike me, who always went to the track for “professionals”, the professionals would not be caught in a track that was meant for people with DD. Not only are the sessions meant to include everyone, but the conference has developed over the years to where now about half of the sessions are led by those with DD.

It’s a proven fact that even nondisabled can learn, and I mean really learn, from the disabled experience. There are many professional people with developmental disabilities there, but one honestly cannot distinguish who is a “professional” and someone who might be on their way to becoming a professional.

For me it’s easier because I have both disabled and non-disabled friends, so in between sessions when people just hang out and socialize, I don’t have to choose which “group” (the disabled or the non-disabled) to go out to dinner with, or who to sit with in the bar to have a beer because everyone hangs out together without discomfort.  I have made true and good friends, some disabled, some not. I know that this may sound weird, but in other situations I have been put in predicaments where one group would make it clear “they are not like you Renee”, not so much expressed in words, but in looks and insinuations. It’s kind of like having a black friend in the 1940’s, and you are a light skinned black person, but you “pass”, so you are welcome in the group, but your friend who can’t “pass” makes others feel uncomfortable. Sometimes I even had disabled friends who did not want to sit with my non-disabled friends because they felt uncomfortable and not free to talk the way people with disabilities talk. I hope I always chose wisely, but afraid I was/am not perfect all the time.

This year was really special because it will probably be my last. If I am around next year, I don’t know what condition I’ll be in, or if I’ll be well enough to attend. Of course my doctor’s are not putting a time on it, but unless they can pull another miracle out of their ass like they did last year when they operated on the cancer, one knows it is getting towards the end of miracles. It was a little things that I noticed this year, maybe not so little to me, but maybe insignificant to other people.

There were literally almost a thousand people at this Conference this year – last year it was 800 which was a record in itself, but this year that record was decimated. For the first half of the first day of the conference I did not have my name tag on. I would be walking down the halls in the conference area and people, most whom I recognized, some I did not, would come up and say; “Hi Renee”! Some would stop and engage with me, some were on the way to events and recognized me by saying hi. I had to smile because it was just non-stop people greeting me by name. My dear husband who accompanied me the first day, said, “Is there anyone that doesn’t know you here”? Although I am very much a people person (not so much of a people pleaser”), it got kind of embarrassing at how many people knew me. It’s hard to explain why it feels embarrassing, but I guess I realized I must have done something to impact that many people, and although people I trust have told me what I have done to effect change, I just don’t see what I have done, so somehow it feels like a sham – even though I am not doing anything intentionally to create the sham, but since I can’t see or understand what I have done to affect so many people it just feels that way. At the same time, realizing I must have did something to impact this many people, can’t help but make one feel good. It reminds me of that song from The Sound Of Music, “I Must Have Done Something Good”.

Perhaps I had a wicked childhood

Perhaps I had a miserable youth

But somewhere in my wicked, miserable past

There must have been a moment of truth

For here you are, standing there, loving me

Whether or not you should

But somewhere in my youth or childhood

I must have done something good

Nothing comes from nothing

Nothing ever could

So somewhere in my youth or childhood

I must have done something good

Another thing that really meant a lot to me, is the Ability Center sent two of their employees from the youth department to Synergy for the first time. Although it’s true that all youth may not need DD services, however if their disability is expected to last for life, they are considered as having a developmental disability because the disability was present before the age of 22. Independent Living Centers have been notorious for staying out of the DD world, some of this is for logical reasons – the two have different philosophies of disability.

Things change over time and the DD system is moving closer to the independent living philosophy. In Ohio the two systems have been working more and more together over the last 10 to 15 years. Many would say I influence this coming together because I have my feet staunchly planted in both worlds, so I knew the pros and cons of both. Not necessarily talking about philosophy as a pro or con because I definitely embrace the independent living philosophy all the way and until my dying breath I will be pushing the DD system to fully embrace the independent living philosophy. The pros and cons I’m talking about have more to do with services of both systems, rather than the philosophy behind them.

Anyway, one of the employees came to my session in self-determination versus self-direction. She said, “Wow Renee, you have a lot of courage to stand up in the Conference and talk about the system”. To be truthful, I have seen much improvement in the DD system over the past 15 years. That is because people like me were not afraid to speak up and say what we want this system to look like when it supports us. It may have taken the system awhile, but they started to listen. Often I was reminded that systems can’t change overnight, which I knew was true. However, I was not afraid to remind the people in the system that as they’re taking their time to change, someone with DD is crying in their bed because they are being held back by the system’s oppression. I’ve always said, “Be mindful that the system can’t change overnight, but work as if it can”! It does take courage to boldly point out truths. It felt good that someone still sees my courage. For courage is not in the absence of fear, but courage perseveres in the face of fear. Also, fear is necessary to keep the person balanced, so they won’t say something angry or not helpful to what they are trying to accomplish. I pray I always have some healthy fear, for I have found that is the only way my courage is genuine.

I also have to say something about my talk. For the past four or five months my voice has been going out on me in that it is a struggle to project my voice out. During this time I have struggled more and more with my presentations. Having a speech impairment already was always worrisome enough, but lately I really wondered if my public speaking was over. I was talking to my friend who does not have a disability, but for some reason she has trouble projecting her voice too. It’s like a tightening in the throat, but it is there all the time for both of us, not just during public speaking.

When I went to bed that night before my talk, I was thinking, “God, I don’t know if you want me to do this anymore, so this might be the last time. Give me some sign that you want me to continue, and it’s not my ego”. I don’t want to be like Trump or Biden that keeps going after they really can’t do it anymore because they feel like they are the best, or the only one that can do it.

I must confess, I did not turn it totally over to God because I kept mulling over in my mind what technologies I could use in the future to keep imparting my knowledge through public speaking. Maybe using Voiceitt or some other augmentive communication technology. Being in a crowded bar all night the night before, trying to talk over people, was probably not the best thing to do for my voice either, but it wasn’t purposely to challenge God, it was just the way it was to be included. The next day during my talk, I suddenly realized I was talking without a struggle. That tightness in my voice was somehow gone. My throat was not tightening up, words were just flowing out in my normal CP tone. Upon realizing this, I was like, “Wow can this be true, or is this just what I want to see”?

A lot of people may know me, but those who call me “friend” in a mutual respect, I probably can count on two hands (which is actually a lot considering experts say people only have three or four friends at a given time). Actually, a lot of my real true friends were there. Being able to talk to people about what is actually going on in your life in response to the question “How are you?”, where my pat answer is either “ok”, or “hanging in there”, both are true answers depending on the day. But with friends who really care and make the time to talk, one is able to elaborate more on what is going on in their life, and it is mutual. As much as they want to know how well you are doing, you equally want to know how they are doing. So there was plenty of time made with friends for open communication. I really needed to talk to friends about my life and get affirmation that I was seeing things correctly and in the right direction. Talking with your husband is one thing, but talking with friends it is totally another thing. So that was good.

One more thing that is a must to talk about is a mindset change in people with DD themselves. They are talking about things that I heard myself say years ago! And the quality with which they are speaking has floored me. It’s been reported to me that there is now 35 people with DD on County Boards. In 2025 it will be required that all 88 counties have at least one person with DD as a voting member of the County Board. Of course, this should be like “Dah, why wouldn’t people with DD be included in their own county boards that governed their services”, but if you knew what the fight was over the past 20 years in order to get to this point, you would understand the cause for rejoicing. Although I had a lot to do with the change, I find it funny that I’ve been told, because of my mouth in pushing county boards to serve better, rather than being grateful for the crumbs they initially doled out to us, I will never be considered for appointment to the County Board. But actually that is more of a compliment that an insult!

Some of these people I have mentored, and to see them taking the reins does my heart good. Sometimes when I feel left behind, I remind myself, “That’s the way it should be” and just feel gratitude that I can leave behind a group of people that will keep pushing my dream forward.

Another touching thing was, winning another Synergy Award. Come on, there was like 1,000 people there, and they had a hundred and three nominations for four awards. What is the likelihood of getting another award? Okay, to be fair, it was a group award for the Tech Ambassadors, of which I am one, but still…  Okay, I guess they can’t help it if I am involved with everything. I do want to give a shout out to my fellow tech ambassadors who are striving to make this endeavor grow and develop into an even more professional opportunity for people with DD to impart their knowledge, so others with DD can live more independent and productive lives.

The final speaker I think was the most beneficial to me. It was called the “Ninja Warrior”. The speaker, which I do not recall her name or the reality show that she was on, talked about “Adversity Builds character”. Shit, I could have written the book on that one! Oh wait, maybe I am, it will be out October 25th 2024. Did you ever hear someone speak and every word resonates with the core of you? She talked about how hard times builds muscle and that is so true. You don’t learn from the easy stuff, we learn from the difficult stuff. That’s why I emphasize to parents of children, whether adult children or minors with DD, don’t pack your kids in pillows of supports, it only arrests their development and growth. They should have the right amount of supports to be the wind beneath their wings, but they have to fly and take risks, and learn from their mistakes. If you can’t risk mistakes, than if one succeeds, how can they take credit for that?

The three words she used were; Perspective, purpose and perseverance (from not taking notes, I think that is pretty good recalling these words for memory). I think I’ve practice these all my life and didn’t know it, or probably didn’t have these particular words to express what I was doing, but that is exactly what I was doing. Realizing this, I realized that is probably why I’ve survived cancer as long as I have. I understand my diagnosis, what I am facing. I always knew and accepted the logical end. That is perspective, not denial. However, my purpose was greater. This knowledge that one’s purpose takes precedence because it pushes one’s boundaries, is also rooted in perspective.

My purpose was to help change the system so all could live a free life, to develop and grow into the person they desire. Purpose is my reason to get out of bed even though I may be facing incredible pain and challenges to achieve the objective of that day, for to get me closer to my overall purpose in life. Since I was a child I have always set my goals extremely high, some said they were unrealistic, but I achieved them in short order – so I had to set higher goals. One has to have something difficult to strive for else life loses its meaning and purpose. In my youth, one of my favorite songs was; “To Dream the Impossible Dream” from “Man Of La Mancha”. This song still carries a lot of meaning for me today.

Perseverance – no matter how I’m feeling I keep going. That doesn’t mean I don’t take time to take care of the things I need to take care of for myself, in order to keep myself going and healthy. However it’s not my focus, it’s a side note, something I have to do in order to fulfill my purpose.

This is rather a long recap of the synergy conference, but I wanted to share how meaningful it was to me. I hope if you never considered going to the conference previously, you will consider it for next year, whether you are a direct care worker, work in the County Board system, a state employee, a CIL employee/member, a person with a disability or a family member. There are take a ways for everyone.