by, Renee Wood

            Before I go into why I view terms such as; “self-determination”, “self-direction”, “self-advocate”, “alone time”, “Supported-Decision Making” etc. terms of oppression when used regularly in one’s everyday life, I need to give some personal historical background.  Before I became involved in DD advocacy, these terms were not in my vocabulary and some I never even heard of.  Yes, I was always described as “having a lot of determination”, which was a strength I naturally had, but I never strove to be self-determined because it’s the birth rite of being born in a free society.  This blog is 5 pages, but if you read to the end you’ll understand why these terms scream signs of oppression especially in a system that is supposed to give support to live the typical life.

Being physically disabled from birth, with no sign of an intellectual disability, I attended a school for those with orthopedic disabilities who were able to handle age appropriate curriculum with minimum accommodations.  Although the school had its own set of oppressive modalities, such as low expectations for a typical life of; employment, relationships, independent living, etc., at least we were given the dignity of the rights of our own thoughts, dreams, and freedom to forge it on our own.  Yes, teachers may have challenged us with, “And just how do you think you’re going to manage that”?  In hindsight, it was just a question, there was no sense that they, or our parents, had any legal authority over us that would prevent us from trying once we turned 18.  The circumstances of the outside world may have defeated us, but there was no inside system holding us back. 

            Until I was 42 years old, I didn’t realize all people with CP (Cerebral Palsy) were classified as “Developmentally Disabled” (DD).  But wait, wasn’t I classified as “Orthopedically Disabled” at a very young age?  Up until then, my experience with the DD system was being employed as a regular employee for them.  The first time, at the young age of 20, I got detained with non-verbal, naked, intellectually disabled people, in a locked cottage, of which I had an adapted key to unlock the door, and a notebook that said “Assistant Volunteer Supervisor”. The people working in the cottage removed these from my possession as if I obtained them by some unknown means.  Now one would think, with a notebook, an adapted key and being verbal, an employee working in the cottage would deduce that I was who I said I was.  No, they had to find out where I “belonged”.  The only reason I stayed is my boss ripped them all a new asshole for not being able to distinguish the difference. 

Working there left an impression on me.  One day, as I was supervising volunteers in one of the higher functioning cottages, I vividly remember parents dropping their son off, who was between 9 and 12, had red wavy hair and thin, to live there.  When they left, the child was obviously frightened and hid behind the living room curtains and had an accident in his pants.  The staff was decent at coaching him out to give him a shower, but it was a matter of routine without empathy for what a young boy, just abandoned by his parents, might be going through.  Remembering that day, I still feel that ache in my gut.  I was too young to know what to say, but my feelings were “This is just awful!  How could parents just dump their kid”?  I now understand it’s far more complicated than that, but as a young person those were my thoughts and feelings.

Another time, working for The Ability Center, I was to meet with a person in a sheltered workshop.  The receptionist when I got there, listened and understood my reason for being there, but when you have a significant disability and walk into a sheltered workshop, you are suddenly transported into an atmosphere I cannot describe, but it is palpable from the outside world.  You can actually feel your powerlessness in there – all the typical people have the power and are constantly watching – it’s actually a creepy feeling.  When I was leaving, it was a different receptionist and she said I needed to sign out with the name of the workshop I work at because she didn’t recognize me as working at that workshop.  Although the assumption that I must work in a workshop was offensive, I did understand, and explained that I work for the Ability Center and was waiting on my ride.  She said something to the effect of, You can’t leave until you sign out.  You must belong to some workshop, which one is it?  That just pissed me off!  Not being young anymore, I had my words.  I said, “Just so you know, not every person with CP works in a sheltered workshop – some have jobs in the real world.  I’m leaving now”!  And I left.

When I worked at the Ability Center is where I found out I could qualify for DD services, but I was on the PCA program through the State Rehabilitation Services and it was serving my needs at the time.  My direct supervisor had a child with DD and we would talk about the issues with the system all the time.  I claimed I was going to “Infiltrate the system and change it from the inside out”.  Granted, I was joking at the time, but there was a certain truth about it that kept gnawing at me, but I couldn’t figure out how to do it without getting trapped.  No freed person willingly goes into slavery to change it for others, even if you want to, it defies self-preservation, so there never seems to be the “right time” to have yourself willfully shackled.  However, if God wants you, he will find a way.

Due to my severe CP, my neck wore out and I needed an operation in September 2003.  After the operation I could no longer toilet, dress, feed or get in and out of bed myself the way I used to. I also lost my job, so I didn’t qualify for PCA anymore.  Floris, my husband’s FLMA was up, I was struggling with lots of pain (pain lasted a year plus after the operation), I needed help so Floris could go back to work in November.  Our friend was helping me use the restroom on her lunch break from November until April when she was going on vacation, so something had to give.  We called the local county board out of desperation.  Luckily I had a friend of 17 years who worked in a higher position at the county board and knew me well.  I took the OEDI in March and qualified for services in April.  Since I didn’t qualify for Medicaid, I was given a small Individual Budget which more than sufficed my needs at the time.  I only needed 2 hours in the afternoon when Floris was at work to feed me, help me use the restroom, and do some light housework, then I was fine until he got home.

My friend who knew me at the board, understood my fierce independence and fear of being controlled by the system.  She must have hand-picked my first SSA.  Let’s just say he was “unconventional” and we got along famously – still friends after he retired.  “Here Renee, write your own ISP, you’re more than capable and I’m not doing it”.  Anything I wanted, that stayed within that budget, was approved.  I’d pay out-of-pocket, submitted a monthly invoice with receipts, and was reimbursed – perfect independence!  But I knew that was not how it usually worked, so I laid low hoping to go undetected to keep my freedom.

Losing my job was devastating – depressed only scratches the tip of the iceberg, at age 42 my life, as far as doing anything meaningful, was over.  I truly believed I was a failure.  Nothing Floris said resonated – he was my husband and loved me, so of course he would say positive stuff, but it wasn’t true to me.  Plus dealing with pain and my new normal of lack of abilities to do things myself, everything seemed hopeless.  After the operation I was unable to pick my arm off my lap, I could move my hand and fingers but could not lift my arm, not even to drive my chair, unless someone picked up my arm and placed it on the joystick.  Before Floris left in the morning for work, he’d place my hand on my computer mouse.  No longer able to raise my arm to type with one finger using the keyboard, I learned to type with an on-screen keyboard using the mouse.  I had to sit at the computer until our friend came to help me use the bathroom.  Then she set me back up at the computer with my hand on the mouse and I would stay that way until Floris got home from work.  I would say it was about January when I could lift my own arm again, not as high as I used to, but high enough to drive my chair and give me the freedom to at least move about.  I still couldn’t do what I used to, but was thankful not to be tied to one place for hours until someone could attend to me.

Many good friends, but one in particular, who was disabled and worked in the office of disability at the University of Toledo, could see I was in a depressive funk that I wasn’t able to shake.  When I was working, I was finishing my Bachelor’s degree and BVR was paying for it.  Of course, I took the semester off for the operation, but after everything turned south, finishing my degree wasn’t even on my radar.  My friend said, “Renee, come back and finish your degree – BVR is still paying for it and we’ll get you a scholarship”! Hem-and-hawing, I said “What’s the point, I’m never going to have a career or be anything but a loser”!  Floris, the university college professor, pipes up and says, “A university degree was never originally intended for careers – that came much later.  It was intended to broaden a person’s horizons”.  After further discussion, I said I would try Spring semester – it was the best thing I could have done at the time.  I took some on-line classes in the spring because I was still healing from my neck operation, but was back on campus in the fall. 

Meeting new people, engaging in intellectual conversation with professors, while maintaining a 4.0 GPA and making the Deans list that year, was raising my self-esteem and confidence in my abilities.  In the Spring of 2005, I was asked by the Diocese of Toledo to be a contract worker for them in doing accessibility surveys, make recommendations and do follow-ups for the 120 churches in the Diocese – basically a 3 year grant project.  The best thing was they sought me out, my hourly pay was substantially more than what I was making at the Ability Center, and even though it was far fewer hours than the Ability Center, I had realized long ago that a full-time job just wasn’t doable for me – especially 8:30 – 5.  This was the perfect fit at the right time. 

I knew the ADA requirements like the back of my hand, and carried a measuring tape and fish scale everywhere.  The Diocese treated me with respect and honored my expertise, in that my recommendations on how to make individual churches as accessible as possible, were carried out.  In fact, they closed a few churches based on the inability to make them accessible.  Because of the priest shortage, they were looking to close some churches anyway, so my reports on accessibility was pinnacle in some of those decisions.  Once I realized I was a good, responsible worker and was respected for the job I did, I had to let the past pain and resentment for losing my job go – never fully understanding “what it was that I did that was so wrong”.   Once I let go and forgave, in time, it became quite apparent that God had other plans for me – things I would not have been able to do if I were employed at the Ability Center.

Floris retired and I graduated with my Bachelor’s in summer of 2005.  Although I was working for the Diocese maybe 10 hours a week, one could basically say we enjoyed the life of retirement.  Being in my mid-forties, adapted to my new limitations and fully recovered from the pain of neck surgery, I was getting antsy for something to do.  I was still managing to stay off the radar screen of the local county board.  They did increase my budget a little and were giving me an allotment for transportation now (PDGS before it was ever dreamed of).  Only a handful of people might have known my name at the board – I don’t think the superintendent had a clue who I was.  Just send me the money after I turn in receipts and I will go on and live my free life without interference!  In 2007 I got a new SASS and my life was about to change forever.  I have wrtten and told this story many times, but to briefly recap, I was introduced by my SASS in 2007, to a 55 year old woman who needed a friend – it just happened I knew her from the school we went to.  Listening to her heartfelt dreams of always wanting her own apartment and her disillusionment at the county board about to place her in a group home since both parents were deceased, just chilled me to the bone!  The board claimed they couldn’t find an accessible apartment, but thought she wasn’t ready yet since she never lived on her own – she needed to build “skills”.  I’m like; “WTF, she can’t build skills (if she even needed that) in her own apartment”?!  I worked with her and listened from April until July 21^st when they placed her in a group home and she called me crying that she just hated it there. 

I remember sitting in a bar in Canada, pondering her story over a beer, and feeling in the core of my gut that something had to be done – they weren’t listening to her, essentially didn’t give a shit what she wanted, and was doing what was protocol and easiest for them!  Under their plan it was literally going to take years to get her own apartment and she had already hung on to this dream so long under her parent’s regime – it just wasn’t fair.  That night I made a commitment, if she was willing, to do whatever it took to get what she wanted.  When I returned to the States, me and her secretly apartment shopped, found an accessible one she could afford (income was higher than SSI due to dad’s pension), she signed a lease and she was out in October – 3 months after placement in a group home – that had to be some kind of record.  It didn’t go down without a whole lot of hullabaloo at all levels of the county board.  So much for remaining under the radar.  In 2008, I was given Self-Advocate of the Year Award by the county board.  At the time I didn’t even know what a “self-advocate” was, I knew what an advocate was of course, but never heard of a self-advocate.

In July 2008, I received an email from a friend who was going off the Ohio Developmental Disabilities Council and was inviting us to apply.  It was only sent to 3 people so I knew it was something she thought I would be good at.  When I worked at the Ability Center, I asked my boss if I could apply, and she said no, and put a “Big shot” on it from the center after I left.  Other than that, I had no clue who DD Council was, or what they did, but I did do the intense application process and received a phone call to give a 3 minute speech to the appointment committee.  I showed up and there’s like 9 people ready to give speeches – I didn’t have a chance I thought, which was ok since I told myself I was doing it for the experience.  To this day, I don’t remember what I said, except, “There’s people lying in bed at night in institutions, crying, wanting to be freed.  Those are who we should concentrate on”.  I remember getting a subtle approving nod from my soon-to-be friend, Shari.  After the speeches, Floris and I headed to the car without speaking to anyone (we didn’t know anyone).  We get to the car and here comes David Zwayer, executive Director of council, running to our car just to greet us.  I wasn’t used to “big people” wanting to talk with me, and though I must have hid it well, I was quite intimidated by it.  Many people told me sometimes it takes 2 or 3 tries to get on council so I was surprised when I was approved in December to be on Council.

I’d like to say “And the rest is history” and that’s pretty much true, but why and how I influenced change throughout the DD system made the difference.  Although my work at the Ability Center gave me a wealth of knowledge in the Fair Housing Act, Medicaid, Waivers, ADA, transportation and even negotiation tools, I had no clue of the history of how these transpired within the DD system.  This meant my “measuring stick” for how policies would benefit/effect people with disabilities (specifically people with DD) was based on how typical people lived, and what a typical person would want in that situation, rather than comparing it to what the DD system had done in the past, and tweaking it to make it palpable. 

At the beginning (and even today on occasion) I would sit there in these meetings, mouth hanging open, flabbergasted at what was being proposed.  I think my shock and disbelief over what I heard, superseded my fears of speaking up – usually in the form of a pointed question.  One of the first few meetings I attended, someone’s staff person (attendant) approached me after the meeting and said, “I never heard a disabled person talk like you – keep it up”.  Her compliment meant a lot, but honestly, I didn’t think anything I said was that radical – unless, of course, one lives under a system of oppression.

My first lunch and dinner I clearly remember at council.  At lunch, the disabled council members gathered around me like I was Elvis or something.  I was informed that up until then, I had one of the highest scores on an application.  If you recall my history above, my life was just “ordinary” – the same as a typical person’s – married, job (in the community – never a workshop), stepkids, owned a home – nothing extraordinary thus far.  Upon reflection, I think at that time, accomplishing a “normal life” for someone living with DD and receiving county board services, was seen as “extraordinary”. 

At dinner, there were probably 7 people with disabilities and their attendants (14 of us), but I knew there were parents and professionals on council too.  When I knew I was going to be on council, I did some homework.  Word of mouth had it that there was a rift on council, parents and professionals vs people with disabilities (and guess who had the voting majority?).  Casually, I inquired at dinner, if some of them (parents & professionals) would be joining us?  I was told, in a matter of fact tone, that they don’t eat with us.  I asked, “Why?  We’re all equal council members”.  They said, “That is just the way it’s always been”.  I responded with filters off, “Yeah, well, that shit’s going to end starting now”!  You would have thought I gave a “I have a dream” speech, the room erupted in conversation about things that were going on.  I just sat back, listened, and took mental notes. 

It became apparent to me that this was my “calling” to change the DD system from the inside out.  For someone who strove to remain outside the system of DD in fear of losing a typical life (a genuine “outsider” so to speak) it seemed I was the candidate that could impact the system – and the rest is history.

However, before I leave this earth, I would like to make one more significant change to the DD system – changing the everyday vocabulary the professional’s use, which not only screams, but reinforces the oppression of people with DD engulfed in the DD system.  No one has ever analyzed how much oppression the system inflicts on people with DD.  This question isn’t even on their radar, if the professionals in the system even understood what oppression is here, what does it look like, how does it manifest itself, how is the system responsible for this plague?  Incompetence of those they serve, or at least the need to “fix” them so they can assimilate into the greater society, is naturally assumed in the DD service system.  This means one has to discuss what typical people take for granted; deciding the course of one’s own life (self-direction), making things happen that you want, planning what you want (self-determination), asking/educating/demanding your right to have the services and supports you require to have the opportunity for a typical life, that looks like lives of people outside the system (self-advocacy), utilizing your voice (self-advocate), privacy (alone time) and the right to seek advice from others, if one chooses, when making a decision (supported decision making).   

Above are the things a typical American takes for granted, but in the DD system these birth-rights are labeled, discussed ad nauseam, and then these natural rights are either; granted, forced to be earned, or denied to the person by the authorities in the DD system who are placed over that individual.  If that is not oppression by a system, then I like to know what is?!  No typical person discusses or even ponders, self-determination, self-direction, being a self-advocate, self-advocacy, alone time or supported decision making, in everyday life – if ever!  If these natural rights are not taken for granted within the system of DD, then how can we even hope to convince those outside the system that we have the ability to utilize these natural things, as effectively as the average person in society?   We must drop these terms of oppression and speak about life in the ways a typical American does.