How I Found My Independence

Posted March 14, 2012 by Mandy Smith in

Just like any other twenty-seven year old American woman I just want to live a happy, successful, and meaningful life. From the outside I look like a “normal” woman. When you look at my brown hair, brown eyes, and average height you will see a woman who looks pretty “normal”. What you won’t see is my disability.

I don’t use a wheelchair, I don’t have crutches, no cane, and no tell tale sign that says I have a disability. As a young child I had severe medical problems that gave way to Reflex Sympathetic Dystrophy and damage to the Ulnar nerve in my right arm. I also happen to be right arm dominant.

I struggled for much of my life to maintain “normal” activities with my right arms movement and use being somewhat limited. As I got older the limitations increased and the pain became a daily companion. At the age of 24 I finally gave up and applied for SSDI. I was approved in April of 2008.

Difficulties mounted

This was a minor victory because I quickly came to a place where I realized that I was entering a very dark phase of my life. December 2009 I moved back to Kansas after spending three years in Maine. I settled on Ottawa, Kansas and purposed in my heart that I would make this work.

January of 2010 I moved into my apartment with my roommate. By March I began to realize that I was in trouble. My roommate worked more than ever before and that meant that I spent more time alone. My depression and anxiety became so severe that I stopped going out in public. The fear and anxiety related to the social stigmas surrounding disabilities weighed heavy on my heart.

I saw 2 to 4 doctors a week and took 23 medications a day. I honestly spent my days sleeping and mindlessly passing the hours. Life continued on his murky path for months. I realized that I had more trouble doing the basic things around my home that “normal” people just do. I was struggling to function.

Finally I heard about a company in town that had some services for people with disabilities. I called this company and spoke to the receptionist. I scheduled an in-home appointment and within two weeks cancelled it.

I was embarrassed and ashamed. Here I sat at the age of 26 unable to carry out the most basic human tasks. I was struggling with just brushing my hair and would just throw it up into pony tails to hide the tangles.

Taking the First Steps

Two months later I gave in, swallowed what tiny bit of pride that I had left, and called that company back. I expected them to just hang up on me. I mean who would blame them? I wasted their time and cancelled last time.

Instead of being faced with indifference or rudeness I was treated with respect and more kindness than was even deserved. I set the appointment and hung up feeling, if even only slightly, hopeful!

A week later the gentleman from that company came to my house. As we went through the appointment I felt so ashamed and embarrassed that tears came. I found myself having to tell this kind stranger things about my body and my health that I had never told anyone.

After the assessment he told me about the steps involved and the waiting list. I was disheartened. I had opened up about all of this and told all my secrets. I told him all of it and it was for nothing because I would not see services for years.

Finding Hope in Working Healthy

Then he told me that there was the working healthy program. He explained the basics and also told me that he may be able to get me a job where he works. I was delighted. Could this really happen?

After our appointment was completed I called Working Healthy. I was accepted into the program within two weeks. I interviewed at the gentleman’s company and got the job in September 2010. I was just amazed. I kept thinking was there really a CHOICE for me? Could I really get out of this dark place and modulate towards a better future?

I look back at the way my life was and compare it to my life now. I went from being so depressed that I would not go out in public and dealing with so much chronic pain that I could not function to who I am now. I am so proud to say that I am now in a much better place.

One year to the day after being hired I was promoted. I help people with disabilities every day. I help them learn to help themselves and I understand their struggles. I help with wheelchair ramps, mountains of paperwork, assistive technology, medical equipment, finding funding sources, youth advocacy, and I help people learn Independent Living Skills.

Thankful

All I can honestly say is thank you! Thank you to the wonderful people that I am now lucky enough to call my co-workers who took a chance on me. Thank you to Jonathan Sproule for coming that day to assess me and telling me that I could get up and telling me that I could live and not just survive.

Thank you to my mother Rita Marriott who is also my PCA, helps me be the best me that I can be, comes to work every day to help me, and never stops believing in me. Thank you to the Resource Center for Independent Living! RCIL has helped me find my voice, has helped me find my independence, and has helped me realize that I too can fan the flame of acceptance!

Without RCIL and centers just like it all over Kansas I know that I would NOT be where I am today.

This is a guest post written and submitted by Jennifer S. Thank you, Jennifer for sharing your story!

Mandy Smith

Mandy has worked at RCIL since June of 2009. She is a Certified Orientation and Mobility Specialist and provides services in 32 counties to individuals who are blind or have low vision and are 55 years and older.

Related Articles

Work Incentives Allow People To Work and Retain their SSDI

By Beth | November 2, 2023

An RCIL Independent Living Specialist (ILS) was contacted by “Jeff” who said he had recently been approved for disability, but he was struggling to keep up with his expenses.  He also had just learned he would soon be losing his KanCare at the end of the pandemic declaration.  Jeff asked his ILS about his options for going back to work,…

Interviews to help with HCBS outcomes

By Mandy Smith | February 15, 2022

Rehabilitation and Research Training Center on HCBS Outcome Measurement along with the Institute of Community Integration from the University of Minnesota are looking for research participants for interviews.They are testing measures to improve person-centered Home and Community-Based Services (HCBS) outcomes for people with disabilities. Getting services at home or in the community is important for people with disabilities. Providers strive…

Attention! Self-Directing Consumers Learn how to be a better employer!

By Beth | September 9, 2019

Please join us for an informative session on Self-Directing your Home and Community Based Services. Topics will include information on: How to Recruit, Select, Interview, Hire, Train, Supervise and Dismiss Direct Support Workers (DSWs) Understanding Enhanced Care Services (Sleep Cycle Support) KS AuthentiCare (the Electronic Visit Verification Call In System) Having a Backup Plan (of DSWs) Medicaid Fraud Abuse, Neglect…