by, Renee Wood

Officially I’ve been on vacation (staycation) since Nov. 4^th, at noon. Since my paying “job” as tech ambassador (TA) only is 5 hours a week, it wasn’t to vacate from that particularly, but many committees and leadership roles that take much of my time and energy throughout the week. This includes many zoom meetings, reading disability policy, formulating opinions on these policies from the disability perspective, e-mail to go through, some administrative organizational tasks, etc. I am involved with 5 prominent organizations in Ohio (not to mention many State committees and workgroups). November 1st I have taken the responsibility of chair of the Olmstead Task Force to which I was elected in October. In January I will take over as chair of another organization which I will disclose in December. Right now I am learning everything that will be involved with that responsibility which is significant. Except for TA, none are paid positions – I’ll explain more on the internal struggle which was revealed in a dream the night before my friend went to his first day of his new job.  As you can see, I do “work” and in all honesty, I have been more than aptly recognize by awards and accolades for my work and accomplishments.  But never experienced the recognition of a real salary, a promotions of a career.  I’ve had low level jobs, but never a career opportunity.

I had different ideas for vacation than what I have experienced the past 6 days.  I guess God wants me to have some time to deal with some stuff before I move on.  I’m not quite sure what He wants as the end result, but I guess that would be like reading the end of the book and missing the in between and not understanding how the story got there. 

On Friday afternoon, instead of painting as intended, very relaxing for me, I sat through 4 hours of ablest testimony, and naïve ablest legislators who relate to non-disabled parents of disabled children, but who couldn’t relate to the testimony of people with disabilities who really want to live in the community with support.  People with disabilities were there standing in support in of an organization who unequivocally echoes the voices of the majority of the disabled. These legislators couldn’t understand how someone who has never visited or lived in an institution could be against them even for themselves.  Some people are trained to walk on hot coals and do it on a regular basis without pain.  I might be able to learn that skill, but do I actually have to try it, in order to be credible, when I claim that is not for me?!  Not once did they ask a parent, who’s child never lived in the community, if they knew of anyone with their child’s same needs, who were successfully living in the community with support?  It took me 3 hours to compose a post on Facebook about this and I got one ❤ in response.  Ok, that was a wasted 7 hours!

On Saturday, I went to one of my best friends daughter’s wedding, which I had been planning on attending for a year.  My friend is rather wealthy, but when we’re together, I don’t experience that.  We both love gardening, canning, sharing recipes and talking disability issues, that’s what I know – I love her and her family and wouldn’t have missed being there.  I made sure Floris was dressed in a suit, it was gray.  I had a white skirt with flowers, white top, and green sweater (reception was going to be outside in a tent, so I wanted to have some warmth.  But it was the biggest tent I ever seen and super elegant on the inside – like a ballroom for royalty).  The tables were set for dinner, each setting had 3 plates stacked, big to small.  I couldn’t figure out why so many plates, and when to use each, so I watched others and cued Floris in the appropriate etiquette, which if on his own, he would have thought “3 plates – more food”!  The food was delicious with plenty of vegetarian options.  There were 250, 300 people at the reception.

At the wedding I made sure we were there and seated 15 minutes before because I had a feeling it would be quite formal, but I was thinking of “formality’ rather than “dress”.  Upon entrance of 200 seated people, I knew I must have missed the “dress code” section on the invitation (upon later scrutiny of that invitation, there wasn’t anything about dress – how the hell did all these people know?  It must be a cultural thing of the wealthy because I had no clue).  The men were in black suits with white shirts and mostly black ties.  Floris only has 1 suit and it’s medium gray.  He had a blue shirt, it’s really worn in places but was under his suit coat so it would be ok, I don’t think he owns a white dress shirt or a black tie.  The women were dressed in dark colors (my bright white skirt really stuck out), some in silky looking gowns, others very elegant dresses – I could have bought us new clothes if I had only known.  If it wouldn’t have left Floris even more inappropriately dressed, I would have ripped off his coat to cover my white skirt!  I leaned over and whispered, “I feel as comfortable as a whore in a convent”!  My friend and her family were very sweet to us and so glad we came, they didn’t seem to notice our out of place dress. 

My new Chair position in January will probably bring me to donor events, how will I know how to dress and act?  I grew-up poor – really poor – sometimes without enough food at night.  No phone until my mid-teens.  What TVs we had over the years were 2^nd hand and usually broke shortly after.  When I moved out of my parent’s house on SSI, I was very good at managing my money – I had little but never went without basic necessities.  I even saved through the year to buy, mom, dad, sister, brother and 7 nieces and nephews Christmas presents with no financial help.  I was good with money but was very poor until I was 40.  Graduating to moderate income in my 40’s, Floris had to remind me I wasn’t “poor” anymore and didn’t have to watch every penny like a $5 dress once a year.  I still live under my means but comfortably.  I am capable of learning appropriate etiquette for situations but who will coach me before entering situations that, because of my ignorance, I may embarrass myself or others?

Finally, went out with a dear friend Sunday night to celebrate his new position at DODD – it’s a State department under the governor.  I think he may be the first person receiving DD services to be hired in a prominent position in the department (still on the bottom of flow chart, but not a janitor), and young enough to move up – quite a feat to crack the floor of the barrel and climb up from the worms where society renegades the majority of us.  Glass celling?  Shit, we just want out from under somebody’s thumb – but he did it!  I walked with him on this journey for several months now, feeling and experiencing all the same things, almost as if I were getting the job, but never envious or jealous, just incredibly joyful and sharing the excited anxiety of this reality.  There’s some losses, as with any new thing, that he had to process, but overall, it’s for the best.

It’s strange to think that just month ago, for the first time in my life, someone offered me a full-time job without me applying for it first.  I like the organization and the people who work there and knew I’d be comfortable working there, they even said I could work part-time if I didn’t think I could manage full-time.  The proposition was enticing since I really want more people with DD in these positions.  If I were younger I would have jumped at the opportunity because it would have been a foot into a career, but at age 63 that career ladder is burnt to the ground with no time to move up.  Discussing with good friends, where can I best serve at my age?  With some back and forth and a reminder of my beliefs overall, I decided to turn the offer down.  It wasn’t easy trust me, but decided, my voice is louder, freer and needed outside the system than what little it might do on the inside.

The dream I had last night depicts two opposite emotions at the same time.  I dreamt somehow I went with my friend to his first day of work – maybe to support him – I don’t know, it was a dream – ok.  Anyway, I am in the background listening to them describe his job and responsibilities and all.  Suddenly, Dir. Hauck looks right at me and says: “And we have a position for you too”!  At first I thought I was dreaming (which I was), but then my face lit up, and I am all smiles but nervous.  She walks me around the building which has huge windows (it does – I was there many times talking with John Martin when I was chair of DD Council) telling me about this position.  Now I don’t remember what the position was, or what all she said about it, but in my dream I seem to understand perfectly.  To be working here was thrilling.  The dream was so real that when I awoke, it took me far too long (a few minutes) to realize I dreamt it.  In those few minutes, when I stupidly thought I was actually hired, and going to work for DODD -the reality was daunting.  I thought of the things I might have to give up – my blog – which points out flaws in the system, my voice at many tables, which makes authorities think, and has brought about meaningful change, as well as getting up at the crack ass off dawn 5 days a week, for work!  As soon as I thought, “Why the hell was I so taken in by that job, that I got myself into this?!” I realized I dreamt it, I immediately groaned into my pillow, relieved!

However, there is a message for me in this.  I still struggle with the inner demon of never having the opportunity for a career, as I would today? In my life, I know I have done and accomplished much, even more than some with careers.  But somehow a life spent never being seen as “good enough” to be hired for a real job that you could move up in to your true potential, makes me feel “less than”.  I know I am wise, I care about others, I am intuitive and disciplined (except my mouth, but even that has gotten better.  I can express my same points with words that are still poignant, but doesn’t sound as harsh), so I just wonder what I could have been if given a fair chance.  I accept it was the time I was born, and no matter how much I yearn for the opportunities that I might have had in today’s world, I’m just too old to experience them. 

My mom always said I was born way before my time because even at a very young age I recognized people like me were treated different and I didn’t like it.  As a young person (even before the age of 7) I didn’t have the “big words” to describe this different treatment or the emotions it brought with it, so I would say, “That’s not fair”!  It seemed everything wasn’t fair!  My family probably got tired of hearing this.  Funny thing is, I never felt my physical limitations were unfair, but the unnecessary limitations society placed on me is what I claimed to be unfair.  My mom was right, I was born way before my time, because I was always the first disabled person in my time and location, to break new ground. First to move into my own apartment and live by myself.  First to get a real job.  First to have a real boyfriend and was evicted because people thought it inappropriate for a young disabled woman to have a man stay overnight. When questioned (lease said nothing about overnight guests), my mouth didn’t help me much, “We’re having sex.  Would you like to watch and see if we’re doing it correctly”?  First to pay my own bills with no payee or family assistance (try putting a check in a typewriter – but I did it because I wanted independence so bad).  First to say “no” to a system who would have held me back. 

Many followed close behind me doing some of the things I already did, but I had nobody with a disability to mentor me because I didn’t know any disabled people were doing what I wanted to do.  I had to cut my own path and others were learning from me and following.  In those early days, I’d like to say I was doing this to pave the way for others, but I was not that reflective of my role.  I was doing it because that’s what I wanted.  When people said I couldn’t, it’s not possible – I did it anyway, then made sure they knew they were wrong when I succeeded.  I didn’t know the impact my actions had.  I still have people who come up to me today (many I don’t remember meeting) who said they met me in my 20’s, 30’s and even my early 40’s who speak as if I made a lasting and memorable impact on their lives, but I feel guilty because, if I impacted someone’s life that much, shouldn’t I remember them?  One person said that we only met briefly, but that he heard me talking to someone in a way he never heard disabled people talk, and he thought I was “bad ass”!  Another said she just stood back and watched me because she was intimidated by me.  I apologized expressing I never meant to scare anyone.  She responded, no, no, it was a good kind of intimidation, no one was like you!  I always thought being intimidating was a bad thing, until I read this (https://www.inc.com/peter-economy/5-reasons-why-being-intimidating-can-be-awesome-fo.html#:~:text=While%20being%20intimidating%20has%20become,higher%20expectations%20for%20your%20work.), then I understood what she meant.  I cannot lie, I have parts of all 5, but #4 fits the most.

Now I feel like Moses who led people to the “Promise Land”, realizing for the first time that I will only experience the promises of now, from afar.  Moses did what God wanted, but in his humaness, did he ever feel a loss at doing the work of getting people there, and then being too old to partake in the Promise Land himself?  Or, was it enough to know that he led people to the hope he only dreamed of?