By, Renee wood
I wanted to build on my last blog “The 30 Hour Trap”. That blog attempted to raise awareness to the false notion that CMS is now requiring the DD system “to require” 30 hours a week of totally integrated activities for people with DD who are unable to work in the community full-time. My argument was, if the system understands this in such a narrow way, then this will just become another program that people with DD will be “required” to do to get services, and it won’t fulfill the true intent of the CMS Rule. I pointed out typical people don’t “plan” non-work activities every week per se, but with opportunities, freedom to choose to participate that day, or not, and with readily available transportation – life just happens.
The blog equally pointed out that it is no sin to hang-out with others like yourself, as long as it’s totally VOLUNTARY and not one’s only option as it is currently. I want this current blog to show, using my own life experience as an example that, hanging out with others like myself helped me at times. I hope that putting my life’s activities in a chronological fashion, will also dipict how life develops in a natural way, and changes in activity will occur in that natural development. People who are allowed to experience life’s challenges and triumphs in an uncontrived environment (with appropriate supports to meet their individual need) will grow and flourish. If they remain in a contrived environment to minimize risk to its lowest level, and any success is not actually earned by challenging oneself, but written in the ISP (Individualized Service Plan), then one will remain stagnant and underdeveloped. In reading the following remember I was never perfect, but everything I experienced helped me become the person I am today – and I’m still in process.
In my own life, my activity significantly changed through the years. Once I moved from my parent’s home, my life became very active. I was going to college, hanging out with friends at the college pub, dating, and I went to The Ability Center (formerly Toledo Society for the Handicapped – TSH) to participate in recreational activities such as; circuit training, aerobics, creative dance, poetry writing, canoeing, camping, cerebral palsy games and much more. I spent the vast majority of my days in my 20’s and early 30’s outside of my apartment. Got up at 7, first college class was 9:30, stayed to last class was over probably at 3, classes were 3 to 4 days a week and never on Fridays. Went home, ate, and waited for TSH van to get me at 5:30 to go to TSH where I did some recreational activities every night, except Friday and Sunday. Returned home between 10 & 10:30 pm. Fridays were my bar night. And Sundays was the day for homework, cleaning house, grocery shopping and anything else I neglected during the week! During the summer, on breaks and after I graduated from college, I would do day and night activities at TSH, probably 4 days a week. I lived a very active life, full of energy and rarely home.
Probably around 27 – 28 years old I was hanging out with non-disabled people more and doing integrated stuff, but it happened naturally from meeting people at college and the charismatic group at church. I was volunteering at different places and meeting new people all the time. Although I cut my activities at TSH way back, I still like the Cerebral Palsy games and the camping trips. But mostly I enjoyed connecting with my disabled friends and discussing triumphs and struggles, and jokingly plan how we would take over the world one day. It was a safe place to be me. I didn’t NEED them, I had many non-disabled friends, but once in a while I just wanted to be with others who understood!
One might consider what TSH offered in activities then, to current day habs now, but I would argue it’s not the same in many respects. It was the same in that it was segregated activities aside from the general public. What made it different is it was TOTALLY voluntary and one had to pay a small fee to participate. One didn’t have staff in their home saying “You have to go because there’s no staff at home to help you”. If we didn’t show up, TSH didn’t lose government money because we didn’t show that day. Money did not dictate our participation, as it does with the current way day habs are run, our free will and enjoyment did. Many of us became dependent on the ease of participation in activities at TSH, and like with anything, if one becomes too reliant on something it can stunt one’s growth. Truthfully though, by the time these programs ended with one fell-swoop in the mid-nineties, most of us who were there from day one, had integrated naturally into the community. We were either working, having families, or getting into our mid-thirties and didn’t feel the need for as much activity as when we were younger.
However, when these activities suddenly ended at TSH there was a huge outcry and a real sense of loss. There was this new philosophy called “Independent Living” and TSH changed its name to The Ability Center, and people earnestly felt “their place” was hijacked by a philosophy that someone else invented “for them”. Years after, many who worked at the Ability Center admitted, doing it in one fell-swoop was not the best way. People with disabilities needed to be educated and take ownership, and have some say in those changes happening in what they considered to be “their place”.
Another significant change in my activity level came in my mid 30’s when I started to become more reflective of life, especially my life. Things started to become quite apparent to me, but no one wanted to accept my “truth”, or they just didn’t want to hear it, even if they knew it was true because that reality was too dark and they didn’t have a “magic solution”. I felt like I was falling behind people my age. For the first time in life since I moved from my parents at age 19 years old, my life didn’t look like others who were 30-something, and it really bothered me. Other people my age were taking off in their chosen careers – I could barely get volunteer work, others were getting married and starting families – my getting a first date was doable, but going steady was unlikely between my disability and my mouth, I don’t know which one was the bigger turn-off. Everything I sought, from the convent, to real jobs, to participation in community activities was met with placatively apologetic, blatant discrimination. I was angry, frustrated and depressed all at the same time, and talking with professionals (except priests who were my spiritual directors) could exacerbate these emotions, with comments like, “Just try harder”, or “You’re so smart something will come through”, but no one would say the “D” word. It added injury to my soul by them not saying “Yes, this is Discrimination and it’s not your fault, but the only way you cannot succumb to it, is to fight it! Now how can we fight this injustice together”? I rarely went out anymore, except for church, people rarely called. I was alone and isolated and didn’t care about anything.
Along this same time in the mid-nineties, my best friend died, my romantic partner took off for the missions in Africa, and my mom was dying of brain cancer, all within six months. My entire support system had been swiftly ripped out from underneath me and I couldn’t conceive of how I was going to go grocery shopping, do laundry, vacuum or get the emotional support I had been accustomed to. I just saw no purpose in living any longer. Life was pure pain and drudgery. I overdosed twice in three weeks (hid the bottle so no one could find it in case I had to do it again). Both times I was supposed to be locked up 72 hours mandatory psych unit – but I never stayed over 24 hours. The second time I made a bet with the intake person that I’d be out the next day. She said “No, it’s mandatory 72 hours. You’ll be here when I come back”. But I kept secret that I knew there was no way they would want to bathe me and wipe my butt. And I was right!
I wrote a suicide note on my second attempt – the psychiatrist read it – it was mostly about discrimination and how I was exhausted of living in a world that truly didn’t want me. He said he liked the letter, it was very well written, but didn’t like the content. He offered me an antidepressant. I said no, I should be depressed in light of this reality! He said “But you can’t change the wrongs of the world, so you might as well take these so you can live in it”. I said, “Wait, you’re admitting its’ wrong how I’m treated by people, but I need the medicine”? He said, “Yeah, you can’t change the world”! I told him where to put his “happy pills”, gave him the proverbial middle finger, and demanded that they either give me a shower or send me home! I guess reality started to dawn on me that essentially no one really gave a damn if I lived or not, so either, I had to really decide to off myself, and do it right, or live and deal with injustice and discrimination the best I could. I think we know what I decided.
After that I became very active in activism – I mean in your face activism! Don’t ever tell me I can’t change the world (or at least a small part of it) because I will die trying. In one year I was gone 8 months. I was very nomadic and people appreciated my ability to articulate about an issue and present it in terms which everyone could understand, even if they didn’t agree. I was given opportunities for leadership positions in a nomadic, non-disabled community, and discovered I had some innate ability to lead and govern people by listening and empowering them. Living like this was arduous and difficult but I thrived and grew in this environment.
I also discovered much about my internal self. I am a person who needs to live in a community. In other words, if I’m alone and isolated for long periods with no human interaction, I don’t do so well, but it also has to be with supportive people, or I equally don’t do so well. I bloom with those who truly believe I belong with them.
In my 40’s I really had dramatic changes in my activity level. I got my first full-time, permanent job (not so permanent though). With this full-time job I had to be up at 5:30 to catch a 7:30 bus and be there at 8:30, and with college after work sometimes I didn’t get home until 10. This took its toll on my body. I also got married, bought a house and a cottage, and got tragically ill and had an operation that changed my ability to do self-care forever. Because of the operation, my position at my place of employment was “eliminated” while I was on FML – the only way they could legitimately “can” me. Like kick a dog when it’s down! My husband and some great friends pull me out of that depression of feeling like a total and utter failure. I remember one of my friends saying, “The best way to get even is to become a great success in life”. With their encouragement, and belief that I was not a failure, and indeed was wronged by my employer, I went back to college to finish my BA. I also found the perfect part-time job for me within 6 months of losing that other job. I did all this while still regaining some use of my right arm, which just laid in my lap for months after that operation!
In my 50’s, I went back to activism but in a different context. I now find myself sitting on State boards and committees (some of the ones I would sit in their lobby to protest), and again my leadership skills blossomed. I was eventually appointed by the governor to Chair one of these State Councils, the first woman with severe DD in my State to be appointed to such a position. After my term was over, I assumed another Chair position on a State Task Force. Working within government challenged me to gain organizational, negotiational and administrative skills that I never dreamed I had.
Even now, at age 57, my life and activities are still evolving. Besides my trips to Columbus to sit on the aforementioned boards and committees, most of my activity centers around my computer in my home. My husband often responds to questions of “What is Renee doing now a days?” with “Running her empire from her laptop”. Although I cringe at this answer because, to me, it sounds like he’s saying that “I’m a power-hungry-evil-genius”, rather than someone dedicated to bringing freedom and equality to the disabled population, but essentially it’s a true depiction of me working at my computer all day.
To conclude, if I had not been allowed to use the positive and negative experiences of my life to grow and develop, I would not be the well-rounded, well developed, upper middle-age woman before you today. If I would have been so engulfed in programs that I never had time to stop and process my life on my own (without 50,000 professionals weighing in) and/or redirect my goals myself (without explaining to those 50,000 professionals why, rewriting my ISP, and getting everyone to buy in) my development would have been stunted for life because my energy would have been wasted on bureaucratic process rather than productive action. The very programs that are created to enhance one’s development can actually stunt it by getting in the way of natural growth. Remember, if one gives a baby chick too much assistance with pecking its way out of the shell, the chick will die.