When roles are reversed

I watch her getting so excited about the progress she makes. “Look at me. I can stand without holding on. Look I dried the dishes. Look I can reach on top of the fridge.” She stands tall and proud.

My grandmother is recovering from a recent stroke and heart attack. At the time, we thought we were losing her. Our next fear was that she’d never walk again. But she is a fighter. Just like she has taught me to be. She now walks with a walker and is eager to use her cane. “Look I walked the entire hallway with my cane.” Every day she is progressing more and more.

As I am washing the dishes with her assistance, I can’t help but remember those days when our roles were reversed. I am used to her cheering me on whether it was walking in the snow or attempting to ride a bike. I am used to her making me wash those dishes over again until they are perfectly spotless. I am used to her being my biggest cheerleader. Now I am hers.

“Now, where’s my dessert?” She asks every night after dinner. She can no longer smoke so food has become her comfort. Again, I have to smile at how cute she has become and how much she reminds me of myself. Maybe she is a little bossier. She reminds me she is not a child. She will always be the boss. She still worries about me falling more than about herself. She is adorable and she is fragile. I am there when she is scared. I am there when she is tired. I remind her of how strong she is and assure her that she is safe. I am now her rock just as she has always been mine. There is no greater privilege.

To follow my blogs and posts, follow the hashtag #DISirABILITY

What I learned at the age of Four

January 20th was International Day of Acceptance. It got me thinking about what I first learned at the age of four, the person I am and where I want to be in the future.

When I was growing up, my family didn’t treat me any different than anyone else. I had more doctor’s appointments than others, but I didn’t realize that at the time. I never really even knew that I was different until I started going to nursery school (at the age of four) and the other children in school pointed it out to me. My grandmother then taught me the simple, and yet the most important, lesson in my life. I could do anything I set my mind to. I may do it differently, and that is okay. I can still do it. Teaching me that mind set at the age of four has lead me to be the motivated, determined and sometimes stubborn woman I am now.

I also have been thinking about vocabulary and attitudes. Vocabulary has continued to change regarding people with disabilities and that is encouraging. Changing vocabulary is a good start but we still have to change attitudes. Unfortunately, attitudes seem to be harder to change. We have to teach acceptance. So we are all different and do things differently. It doesn’t mean we can’t get there. I learned this from my family at the age of four.

I did gymnastics in elementary school. I had an amazing teacher who worked with me and helped me to do all the cartwheels and back flips the other girls were doing.

I went to my school dance in my wheelchair after a surgery and I danced. Not the way everyone was dancing, but my own way, using my arms and twirling around in a chair…and guess what? I had a blast!

Somewhere through middle school, I became more withdrawn and more concerned with what others thought of me. I started to lose some of that determination. I didn’t want to walk with crutches because I wanted to be like everyone else. I stopped gymnastics. I stopped dancing. I wanted to fit in. If I couldn’t be like everyone else, I didn’t want to try.

Thank god I have grown out of that phase of my life. It took me a few years, but I got my mindset back to where it had been at the age of four.

It started to come back in college. I wasn’t the smartest person in college. I struggled with the standardized tests, SATs, GREs, etc. I was put into a required summer program they said was “for the average student”. However, I found that determination and motivation that I was taught at the age of four. I studied my ass off and I made it through both college and graduate school. As I got older, I started taking a Tae Kwon Do class for people with disabilities and I earned my yellow belt. The first belt you can earn… But I was back! It did wonders for my confidence.

In my professional life, I have been an advocate for people with disabilities, an educator and a counselor. My goals today are to put all those experiences to use and advocate for sexual health education for women with disabilities. I know it will be a struggle. There will be the naysayers who say it can’t be done. As a person with a disability, I say it can be done and it needs to be done. We have fought (and we continue to fight) for healthcare, education, Social Security, housing, etc. Sexual health education is the next area of our lives we need to advocate for.

Thank God as I have gotten older, I’ve learned to take back some of the lessons of my childhood and I’ve learn to enjoy being me, no matter what others may think. I am a work in progress and I am continuing to grow. The things my family taught me at the age of four have become my best qualities… Determination, motivation and perseverance. I am moving forward, I am excited about my new goals and I am confident!

Being your own sexual health advocate

I had to be my own sexual health advocate. I know I am not alone. Sexual health education for people is disabilities is a topic that is so needed but rarely discussed.

I am Angela, a 42 year old woman with Spina Bifida. I am a widow. I lost my husband to cardio-myopathy (an enlarged heart) when I was 39. I now live with my boyfriend and my two cats. I have been very fortunate as I found two incredible men in this lifetime.

I met my husband when I was 18 years old and still in high school. I didn’t date much before I met him. I remember being in high school and feeling like I was the only one who didn’t date. I always felt like the “odd one” and I felt like a loner. I still do at times. It is a part of who I am. I have learned over the years to accept that part of myself rather than feel ashamed of it. I didn’t have many friends, but the friends I did have were good, loyal friends who I am grateful are still in my life today.

I remember feeling depressed in high school because I didn’t have a date for my junior prom and feeling that same dread as my senior prom was approaching. Until a friend of mine suggested I ask a male friend of hers. I made the call and asked him. He agreed and we went to the prom together. He and I were both drummers. He was impressed that I was a drummer with a disability. Over the next few months, our friendship developed into something more. Nine years later we were married. He was my first sexual partner.

The obvious part of my disability is that I have poor mobility. I have walked with braces and a crutch since I was young. Today, you may also see me with a rolling walker or a wheelchair. This, however, is not the worst part of my disability. The worst part, for me, is bladder and bowel dysfunction. It is embarrassing when I have to leave work, or when I am out with a friend, and I have to leave because I suddenly can’t control my bowels. It is embarrassing when I am on a dinner date and I end up with gas. It is embarrassing when I become intimate with a partner and have to admit to him that I am wearing a diaper.

I had several concerns about sexuality and my health when I started to become sexual active. When I would have sex, I thought I was peeing myself. I would ask my doctors about it, but never got a good answer, except to “Go to the bathroom before and after sex, to avoid infection”. They never told me there was such a thing as a female ejaculation. I guess they didn’t think of the years of torment I would put myself through, trying “not to pee” during sex by not drinking water, constantly running to the bathroom and nearly dehydrating myself when planning to have sex.

My sexual health issues have changed as I have gotten older. As I am aging, my health seems to be declining in general. I am less mobile. I also am planning on getting a hysterectomy later this year because I have a prolapsed uterus. The prolapsed uterus increases my bladder problem and makes sex difficult. I wish I had known more when I was younger about kegel exercises and ways to strengthen my PC muscles.

I now know a lot more about sexual health thanks to a friend who introduced me to Pure Romance. I also know more about my disability and sexuality. I share my experience here candidly because I want to help other people who may be like me. I hope to be a resource for women with disabilities who typically do not have access to this information. I am not a doctor, but I am a person with a disability who has had to advocate for my own needs and find answers to the questions I have had over the years.

To follow my blogs and posts, follow the hashtag #DISirABILITY

My professional background

I am Angela Car, a sexual health educator and advocate for people with disabilities. I am 44 years old and I was born with Spina Bifida. I have a M.A. degree in Criminal Justice and a B.A. degree in Psychology.

In graduate school, I became interested in working with people with disabilities who were either victims of crimes or alleged offenders. I worked as a graduate assistant doing research and I found there was a huge need to support people with disabilities involved in the criminal justice system.

Although there was a huge need, I could not find full time employment specifically in criminal justice and disability. So over the past 15 years I gained experience in a few different areas; from providing substance abuse prevention education for people with disabilities, advocating for access to housing and education, to counseling incarcerated women with mental health issues and addictions.

I became a Pure Romance consultant and received additional training in sex education. I realized that while I am not a great salesperson, I have a passion for educating people. So I no longer sell products. I am grateful for my experience as a Pure Romance consultant because it reminded me of what I am passionate about and gave me confidence to go after my goals.

My focus now is on education, advocacy and sharing my story to help other people. I created #DISIRability to start this important discussion of sexual health and sex positivity for people with disabilities. As people with disabilities, we have the same basic needs as everyone else. We desire intimacy and connection. We are desirable.

I have now been providing sexual health education and sharing my personal story for the past two years at local disability agencies and sexual health forums online and in person. I hope you will take the time to read my blogs. Most of them are about sexual health and disabilities. Others are on different topics I share about my life, such as family relationships and addictions. I look forward to connecting with you.