Ableism and Consent Violations. Please Don’t Try to Assist Me Without My Consent.

I am writing this piece because this happens to me almost every day. Someone touches me or tries to help me without my consent. I am very active in my community with my work, classes, church, weekend retreats, 12- step meetings and physical therapy. I encounter able-bodied people every day. Able-bodied people are those who do not have disabilities (or, for the purposes of this writing, people who do not appear to have disabilities).  Able-bodied people often feel uncomfortable around me. I understand that because it is not every day that abled-bodied people see someone like me out and about. They see me walking slowly with my two crutches. They see me out of breath. They see me fidgeting in my seat trying to get comfortable. They want to offer me assistance. Sometimes they do. I am always grateful when they ask. Sometimes I say “yes”, and I am grateful for the assistance they provide. Sometimes I say “No” or more likely, I say “No thank you” because I am polite. When they listen, I am grateful that they offered and that they listened to me and respected my answer. Other times people insist on “helping me” even after I have said “No” and that frustrates the hell out of me. This is what I refer to as a violation of my consent. My close friends never do this. They have known me long enough to know better. It is the acquaintances I have or strangers I meet in my daily routine that usually will violate my consent in this matter.

You see, we often talk about consent when it comes to sex. Consent is important is so many other areas of life though. Consent should be asked for before you assist someone with a disability. Consent should be asked for before you hug someone or touch someone at all. Consent should be asked of children as well, so that they learn that they have the right to say no to any unwanted touch. Even if it’s a kiss or a hug from grandma.

I have heard able-bodied people say they don’t know if they should ask a disabled person if they need help or not. They don’t want to have their heads bitten off. I will give you my opinion on the matter. Keep in mind, I can only speak for myself. I cannot speak for every person with a disability.  I never get angry at someone for offering to assist me. I only get angry when people will try to assist me without asking, or if they start to assist me after I have already said “No”. I will give some examples below for clarification.

There have been many times when people have offered me assistance and I have said “Yes, please”. This is assistance that I appreciate and is very helpful. Here are some examples. I leave work for the day and walk out to the parking lot full of snow and ice. A co-worker offers to get my car for me. I say yes, hand him my keys, and he pulls my car right up to the curb for me. I give consent if I am at a restaurant with friends and they offer me the end seat. If I am trying to carry something in my hands along with my crutches (a cup of tea, a grocery bag, etc.) and someone offers to carry it for me.  If I am walking to my car in a parking lot and the parking attendant offers to get my car for me. I say yes thank you and they do so. Someone walking ahead of me holds a door open for me.  I go to a meeting and someone offers to get a chair for me. I say yes and they do so. These are all examples of times where there is a perceived need, assistance is offered, an answer of yes (consent) is given, and that help is gratefully received.

Now let’s talk about ableism. Let’s talk about when my physical presence makes you so uncomfortable that you feel the need to “help me” without asking for my consent or to “help me” after I told you “No”.  There are several times where I have replied No to an offer of assistance, and that “No” was either ignored or met with anger by the able-bodied person. Please note that “No” is a complete sentence. I shouldn’t have to explain to you in our 1-2-minute exchange, why I am saying “No” and turning down your offer of assistance. Please just accept “No” as my answer. I will explain further in this writing why I often say no, but it should not be required of me every time assistance is offered. The answer “No” should be enough. Here are some examples.

When you come up behind me as I am opening a door and you grab the door for me. I must always be mindful of who is around me when opening a door. Having using crutches for most of my adult life, I have learned how to open doors. I usually lean into them to help keep my balance. So, when someone comes up behind me and grabs the door, it can throw off my balance. This makes me very anxious and fearful when I am out in public.

When you see me walking to a certain door of a building and you advise me that there is a closer door to where I am standing. If I say, “No thank you”. Please accept that. Truth is, most of the time, I have been to this building before and I know the layout. I know that there are steps on the inside of that door, or maybe one high step, so I am choosing to walk a further distance to a better door for me. Maybe I know that there is a bathroom I can get to easily by that further door and it is less crowded with people outside of the building rather than inside the building. When you have a disability, these are things you pay attention to. I have my reasons for walking to a further door. I shouldn’t have to explain my reasoning to you. A response of “No” should be enough.

Another example may be when you see me carrying my backpack. I know… I am short and I look young. I know when I put the backpack on, I look like a little kid on their way to school. I have heard all the jokes. Truthfully, the jokes get old. Truth be told, backpacks are much easier to use when you walk with crutches. I appreciate you offering to carry it for me, but I have chosen the backpack so that I can carry it myself. Truth be told, I am carrying items I need in that backpack. These may include typical items such as a pen and notebook but also include items specific to my disability such as a couple of diapers, some pads, catheters and a change of clothing. I would feel very anxious with someone else carrying it for me. I shouldn’t have to tell you what is in my backpack. A response of “No” should be enough.

The next example has to do with ableism and disrespect, rather than with offering assistance, but it is another thing people do that agitates me so bear with me. When you see me and you want to tell me how inspiring I am, for just going about my day, please don’t. Many people have told me this. It gets old. I am just a person with a disability trying to go about my day the same as everyone else. It is actually not a compliment to hear “You are so brave” just for going about my daily routine, or to hear “When I want to have a pity party, I think of you and how, if you can keep going, so can I.” These statements are not complimentary. They don’t make me feel brave or inspirational. These statements bring to my attention the fact that you see me “as less than”. I don’t see myself “as less than” anyone else until I hear these types of phrases from people. Thinking of me as less than is not respecting me. Now if you want to tell me I am brave, because I write blogs, I do presentations, and I put my shit out there, go ahead. That would be a great compliment. That is something that I am proud of, but just going to the grocery store like everyone else, is not being brave. I hope you can see the difference.

I do recognize that most of you are trying to be helpful when you try to assist me and interact with me and I recognize that your behavior comes from a place of caring.  If you have gotten this far reading this blog, I want to thank you! It shows me that you care and that is the most important thing. We can all learn to be better in our daily interactions. I also want to assure you that I know my own strengths and weaknesses. If I need help, I will not be shy about asking for help.

I wanted to get this out there because I know people do not understand why I get frustrated. I need to get this off my chest so that I can continue my daily routines. I don’t want the anger to build up inside me. It can be dangerous for me if resentments build and I start to withdrawal from my daily routines. I would rather put it out there on paper and make an honest attempt to be better understood. Maybe if more people understand me, they can reach the place in my life of friendship rather than staying an acquaintance. If you have questions, please feel free to ask me. If you have a disability and can relate to some of these situations, please tell me how you handle them. Thank you for reading!

Ten “take-aways” from the Disability Pride Philadelphia’s second workshop on sex and disability

The Disability Pride Philadelphia workshop entitled “Let’s talk about disabled sex and disability. Yes we have it” was held on 10/26/19 and was a great success! I wanted to share ten things I personally took away from the workshop. Thank you to Vicki Landers and Isabel Kauffman, for putting this workshop together. I was honored to participate. Keep an eye out for the next one!

10. “FRIES” acronym for consent; Freely given, Reversible, Informed, Enthusiatic, Specific.
9. There are so many euphemisms for the words “penis”, “vagina” and “sex”. There are none for the word “elbow” because we are comfortable just saying elbow. Let’s learn to to get comfortable saying “penis”, “vagina” and “sex” too.
8. Tips on how to communicate with your partner. You can schedule planned arguments/heavy discussions with your partner for a convenient time for both of you.
7. Circles of sexuality. Sexual health is the one we talk about most, but the others are just as important. Other circles are Sensuality, Intimacy, Sexual Identity, and Sexualization. 
6. The City of Philadelphia only had one mural showing a person with a disability and it has since been taken down. We watched an amazing film  by Dykumentary that featured the mural while discussing gender identity and accessibility. 
5. WOAR is changing it’s name to…Philadelphia Center Against Sexual Violence.
4. Planned parenthood has a range of services including, but not limited to; cancer screening, treatment for urinary tract infections, and gender affirming care.3. How to put on an internal condom (used to be referred to as a female condom).
2. The function and accessibility features of toys from Passional.
1. That other people with disabilities besides me are interested in kink. We are planning next workshop! Yay!! 

Disability Pride Philadelphia, Inc. is committed to promoting visibility and mainstreaming awareness of the positive pride felt by disabled people and their communities.

For more information about Disability Pride and upcoming events, please contact:

Vicki Landers, Call (267) 788-5946

Please take this survey from Orchids Research

I am excited to share that I recently joined Orchids Research along with these sex educators whose work I admire.

Orchids research has distributed this survey which will help us to develop a free guide for people with disabilities to communicate better with their health care providers about sex. If you have not taken the survey yet, please consider taking it before it closes. Thank you!

BatteriesForSex Twitter Chat

Last month I had the pleasure of co-hosting the #BatteriesForSexChat on Twitter. You can join #BatteriesForSexChat on Twitter on the 1st and 15th of every month. In this session, we talked about communication with partners and communication with doctors, as well as medical treatments and surgeries.  Below are the questions we discussed and my personal answers. Feel free to comment/ask questions. Make sure to follow #BatteriesforSexChat on Twitter!

1. What is your personal definition of sex? (For example. Would it include oral, fingering….)

For me it would be touching of any genitals with fingers, mouth, or your genitals. Intimacy can, of course, include much more.

2. How has your disability or illness affected your ability to have sex?

I have had a prolapsed uterus for the past three years which has gotten progressively worse. I also have bladder and bowel problems due to Spina Bifida, so it can be hard have sex. I am sometimes afraid to get naked. My anxiety makes it even worse.

3. What other things can you so do increase intimacy with your partner(s) when you are unable to have sex?

Cuddling, fingering, oral sex. I love even just how he walks up behind me as I am doing the dishes and plays with my hair, or snacks my butt. BDSM play. I can’t do any heavy impact play anymore but I love flogging and fire play.

4. How comfortable are you talking with your partner(s) about your disability or illness? What symptoms in particular are you uncomfortable talking about which affect your sex life?

I used to be really uncomfortable talking about my bladder and bowel problems with partners. Over the years, I have learned to understand and eventually accept this part of my disability and that acceptance has made it easier to talk about.

5. When is the best time to talk to your partner about your symptoms? Online before you meet? First date? Just before sex? Longer?

I tell people right away online that I have Spina Bifida. Some information (specifically bladder and bowel issues) I wait and share before we get intimate. More long term issues such as my declining health, I share more about as a relationship develops with a partner.

6. Are you comfortable talking with your doctors about sex?

I haven’t always been open with doctors (about being Bi, poly, kinky), but I decided I needed to be. It was important for me to get regular STI testing when I was poly. I also tell doctors about BDSM play to make sure I don’t I cause any serious injuries.

7. If a doctor doesn’t answer your questions, what other resources do you have to answer your questions related to your disability and sex?

I go to a different doctor. I talk to my Spina Bifida team. I talk to others adults with disabilities. Facebook groups for adults with disabilities (including your specific disability or illness) are great resources. There is my group SEXUAL HEALTH FOR WOMEN WITH DISABILITIES.

8. What treatments have you considered to improve your condition? Meds? Surgery?

I tried a pessary for the prolapsed uterus, but it didn’t work. I just had a hysterectomy in July and I am looking forward to having PIV sex again, and using toys! Yay! Bladder and Bowel issues are another story. Still trying to find something that works to avoid incontinence.

9. What concerns do you have about different types of treatment?

Medications for my bladder and bowel issues haven’t always worked long term. I also worry about side effects. I have tried probiotics, apple cider vinegar, laxatives, prescription meds. etc. I now get botox injections in my bladder and I am considering a surgery for my bowels.

10. If you have had surgery, how has that impacted your sex life?

I just had a hysterectomy. I am looking forward to having sex again. I may need another surgery for my bowels though. It is hard to be intimate when you are always sick in the stomach, feeling gassy, and unsexy. So I need to find a better solution for my bowels. I am looking into an M.A.C.E procedure.

Building Your Confidence and Sex Appeal

I talked about eliminating negative self-talk in my last blog You are Enough. Stop feeding Your Negative Thoughts. I have developed a negative view of myself. For me, I would describe it as always feeling like a child. I felt like I would never grow up. Part of the reason was due to society, treating me differently. If I were standing next to another adult, a stranger would always talk to them instead of me. Even if the stranger was asking questions about me. The question was directed at my friend/partner. So, I never felt like an adult, let alone a sexual adult. I was always cute and sweet little Angela or Angie. I also learned that I hate being called Angie because it reminded me of being a little girl. So today, I have had to learn the confidence to tell people, “My Name is Angela”.  My husband would tell me I was beautiful and sexy. But how do I get to that feeling myself? How do I really feel that way? I want to feel like a confident and sexy adult; how do I get there?

Here are some tips I have used to help me to find my confidence and sex appeal. I hope some of them resonate with you and help you.

THIRTEEN TIPS (Because Thirteen is a lucky number for me!)

1. Acceptance. This is me. This is my body. (my weight, my disability). This is who I will always be. I am tired of feeling like crap. I knew I had to change something. So, I changed my attitude.

When I was young, my grandmother raised me with the idea that I can do anything I set my mind to. I didn’t let my disability hold me back. I tried everything. I wasn’t worried about what other people thought. I was having fun. I did gymnastics as a kid. I danced. I went to a school dance in a wheelchair after one of my surgeries and I danced in my wheelchair. I attempted to ride a bike and I rode one with training wheels for a while. I couldn’t do it without training wheels, but I made the attempt and I had fun.  Interestingly, my body shame didn’t come until I was a teenager. As an adult I had to relearn that confidence I had as a child.

2. Change your attitude. It’s not your body that is holding you back. It is your thoughts about your body. Talk to yourself the way you would talk to your best friend. Begin by just notice when you are using negative self-talk. Then change your words. Replace the negative words with something positive. Stop being you own worst critic. A really good book on Cognitive Behavioral Therapy which helped me with changing my thoughts was Feeling Good, by David Burns.

3. If you want to feel sexy, start with dressing the part. Don’t wait. Start today. Be confident and be adventurous. If you wish you looked like the hot models on tv, start wearing the dress, the fishnet stockings, etc. If you think tattoos are sexy, get yourself a tattoo. I have a few myself. I have a portrait of my late cat Annabell, right on my thigh. So, when I wear that short skirt, I wear it proudly as I show off that tattoo. I can’t wear high heels because I wear braces on my legs, but you know what I can wear? I can wear fishnet stockings under those braces, and I make it work. I look sexy. (I wouldn’t tell you to try something that I haven’t tried myself). I said to hell with waiting to lose my weight. I started wearing the short skirts, showing off my legs, wearing the sexy bathing suit. I was confident.

Confidence is sexy. No matter what size you are. No matter what type of disability you may have.

4. Make time for self-care. I recognize that self-care can be tied into how much energy you have. If you don’t have the energy to shower or to shave your legs, you’re not going want to wear that sexy dress, right? Make self-care a top priority. You will be glad you did.  

5. Focus on your health rather than the appearance of your body. See a mental health therapist if needed. Start taking better care of yourself. Start a little bit each day. You will start to feel better.

I started focusing on my health. I joined a 12 step support group Overeaters Anonymous (OA) dealing with food addiction and my life changed. I realized that there was more going on with me that just my obsession with food. I started looking at the reasons why I was obsessed with food and dealing with those issues. I knew all the nutrition information to lose weight. What I really needed was to look at my thoughts and emotions . OA helps me do that. I got healthier emotionally and physically.

6.  Surround yourself with positive people. Get rid of the people in your life who are negative, who put you down, who put themselves down. They are emotional vampires.

Here is another book suggestion: Emotional Vampires, Dealing with People who Drain You Dry, Albert Bernstein. This book helped me in dealing with people in my life who were negative and were using me. People I had trouble saying no to or staying away from. It helped me realize why I needed to do so and how to do it.

My husband was a deejay and ran karaoke. I loved to sing. I sang in my school choir as a kid. It took me two years to be able to get up on that stage and sing karaoke. But guess what happened? I fell in love with it and the people who would attend. They accepted me. They lifted me up. I no longer see most of them, but I have meet other friends and have found a chosen family by joining and participating in various social activities.

7. Read and look at body positive images on social media

Check out #aeriereal. They are using models with disabilities in their campaigns. There are women in wheelchairs and women with crutches. There is also a woman who uses an ostomy bag. All these women are beautiful as they are modeling bras and underwear.

There are also burlesque dancers who have disabilities that I follow on social media. One in Canada, One in Australia and one in California. The one in California teaches burlesque to people with disabilities. Her name is Jacqueline Boxx. Google Disability and Burlesque. She is amazing!

8. Stay active. As active as you can be.

I have taken Belly Dancing Classes and I loved that. I would love to form a group and learn Burlesque. I am not saying I would become a performer. But I would love to be able to do it for my partner. And I know people who teach Burlesque, so if you are in the Philadelphia area and want to learn, let me know. I’d love to try it.

There are many sports and activities that can be adapted for people with disabilities. I have taken a Tae Kwon Do class. Now I am doing chair yoga. These things keep me active and keep me around other people being social.

9. Ask yourself if it is your body you are really upset about.

Most times when I really get down on myself about my weight, it is related to something else that is bothering me. So, ask yourself, did you have a fight with your partner, or your mother? Did something bad happen at work? What else is going on that is making you angry or upset.

10. Be grateful for your body for all it does for you.

Maybe you have a disability, but there are things that you are able to do. Be grateful and do the things you can do. Everyone can find things they enjoy doing. One of my biggest hobbies is knitting and crochet. But that doesn’t mean I have to sit alone in the house and crochet by myself. I joined a knit and crochet circle. I sometimes crochet at the coffee shop and I have met people there. I am still getting out and socializing.

11. Stop trying to be perfect. Progress not perfection. No one is perfect.

If you are waiting to do something until you have the perfect body, you are never going to do it. Ever notice that people who don’t feel good about themselves are never happy no matter what size they are. Same is true of the opposite. You can choose to feel good about yourself no matter what size you are. You can choose to feel beautiful and sexy. You can also choose the people you surround yourself with. We can’t change the family we grow up around, but we can certainly choose our friends and the people we are close to as we get older. Surround yourself with those people that encourage you to be the best you.

12. Stop comparing yourself to other people. It keeps you in the negative and ugly mood. Jealousy makes you less attractive. Begin by noticing when you are starting to feel envy or jealousy. Keep a journal. I learn so much about myself by journaling

13. Continue to work these tips. Confidence is like being in training. You must continually tell yourself you can do it. Tell yourself you are beautiful. Our negative brains can mess with us, so we need to remind ourselves. Print out some favorite affirmations and post them up by your mirror where you will see them every day.  

I am not saying you need to try all the things I have done. Find your own things. Find your own people. Find a space and find the people that you feel comfortable with. If you enjoy cooking, join a cooking class. Meetup is a great resource. Get out and meet people. Focus on socializing, finding friends and having fun. Be confident in yourself.

You are enough; Stop feeding your negative thoughts.

This summer, many of us have been enjoying the weather, going on vacations, enjoying the beach or the pool. As Fall is approaching, we can enjoy pumpkin spice and Halloween parties. Year round, there are lots of opportunities for getting out, socializing with friends and making new friends.

What about those of us who deal with body shame? Those of us who are afraid to get into that bathing suit or afraid to go out and mingle, even though we might be feeling lonely and we really want to get out there. We see everyone else’s fun posts on Facebook and we sit with our envy and we think we can’t enjoy those same things.

This summer, I was busy recovering from surgery which meant no pools and no beach, but I made the best of it by socializing with friends and chosen family. I enjoyed reading outside. I chose to write. I chose to call people. I chose to focus on the positive and do as much as I am physically capable of doing. I haven’t always. I used to focus on the negative. I used to tell myself I couldn’t go swimming. I realize there were a lot of summers I spent cooped up on my couch instead of being outside, by my own choice, due to my own negative thoughts about my body, my body shame. So I started this writing.

 In this post, I want to discuss where this body shame comes from and how body shame affects us all as a society and how it affected me personally. I would also love to hear your thoughts in the comments. Where did your body shame come from? How has it impacted your life? What have you done to overcome body shame?

Sometimes negativity about our bodies comes from family. Sometimes negative thoughts are cultural or from society in general. For me growing up, I was told from family members that I had inherited those “Car family thighs” when I was a little girl. I also received a lot of mixed messages around food from my family.  I was being told over and over again, “You need to lose weight” or “Don’t eat so much”, “Try this diet”, “Try that diet”. Then I was told by the same people, “Finish your plate.”or “Hey here’s a piece of cake and some cookies.” In my Italian family, pasta was included in every meal. It was also often implied that it was rude to say “no” when offered more food or dessert.

Another source of body shame, unfortunately, is the society we live in. Society and the media can have a huge influence our own thoughts about our bodies.  Think about what society tells us is sexy. Most of the time we see models or actresses who are young, extremely thin, tall, with huge breasts, perfect skin, long flowing blonde hair. We see these images and we think that these images are the only image of beauty, of sex appeal, etc. We start comparing ourselves to the images that we see in the media. Who can really live up to that? I would dare to say no one.

What effect does this body shame have on us a a nation? In the U.S, we have a growing obsession with getting cosmetic surgery because we feel we aren’t enough. As a society we are paying tons of money now on liposuction, botox treatments for wrinkles, labiaplasty and other cosmetic surgeries. Body shame can also affect any one of any gender. This idea that women should look a certain way or men should look a certain way can create damaging body shame not only for those who are cisgender but also for people who are trans or non-binary.

What effect does body shame have on us individually? It stops us from living. It stops us from doing the things we love and enjoy. It stops us from getting into a bathing suit and hitting the shore in the summertime. It stops us from getting into that fun, sexy Halloween costume in the Fall. It stops us from wearing that sexy outfit for New Years Eve. It affects our interpersonal relationships. It stops us from calling or texting that person we are want to go out with. It stops us from being intimate with our partner(s).

So what do we do to improve our body image so we can enjoy our summer, the fall and the rest of our lives? Here’s something I’d like you to consider that I have learned. It’s not always our imperfections that are keeping us from enjoying life. It is our negative thoughts about our imperfections. This has been my experience.

The two biggest things I had shame over have been my weight and my disability, particularly my feet. When I was young I loved swimming. Swimming is one of the few beneficial exercises I am able to do with my disability. As I got older, I missed many years of swimming, because of my body shame related to my weight and my feet. I didn’t miss out because of the fact that I am overweight and that I have a disability. I was physically capable of swimming but it was my negative thoughts that stopped me from swimming.

We often start with just one small negative thought that we keep repeating to ourselves or even repeating out loud about ourselves to other people. You know the phrases I am talking about here. “I am too fat. I am too skinny. I have too many pimples. I walk funny, etc.” Then we feed this negativity and it grows. The more you entertain negative thoughts, that is, the more you say these negative statements, the more negative your other thoughts become. It is a downward spiral.

I started off in college with this simple belief that I couldn’t wear a bikini until I lost weight. These negative thoughts continued and grew worse over time. Soon, my belief turned into “I can’t get into a one piece bathing suit until I lose all the weight. So for a while, I would wear a tee shirt and shorts in the pool. Then my negative thoughts continued to grow and all of a sudden I was too embarrassed to even get into the pool. The more energy I focused on the negative thought, the more destructive the negative thoughts became.

I also never liked to be seen barefoot. My feet are very small. As a result of Spina Bifida, I cannot move my feet or my toes. One toe sits on top of the other on my right foot. I have had many surgeries on my feet. I never wanted anyone to see my feet. I would keep shoes, my leg braces and socks on at all times without realizing that other people at the pool don’t care about my feet. They are having their own fun. This negative thought grew and eventually affected me when I would have sex with a new partner. I would be comfortable getting naked but I would still be uncomfortable taking off my socks. It wasn’t until a partner pointed out to me, that I realized how silly I actually looked being naked with socks on in bed. Fortunately, I can laugh about that today.

As I am getting older, I can no longer walk barefoot. That is something I wish I would have done more when I was younger. My biggest regrets have not been the things I have tried and failed, but the things I didn’t try and the things I missed out on..The relationships I missed out on… The pool parties I missed out on…. The intimacy I missed out on. Why did I miss out on these things? I missed out on them, not because of my weight or my disability, but because of my body shame and my negative thinking.

Think about when you get older or about when you are no longer here. Do you really want to be remembered for your perfect body or do you want to be remembered for the things you did with your time on earth. When you are older, do you want to have regrets of the things you missed out on because you felt too embarrassed to get out and try? If you are able to get out there and go swimming, go for a walk or roll in your wheelchair outside, go to an event and socialize, then today is the day to do it. Don’t wait for some day because some day may never come. Today is the day to get out there.

Although I have some regrets, I refuse to dwell on them. Today I am enjoying life to the best of my ability. I have learned to love myself. I have learned that I am enough. As I begin to have positive thoughts, the positive thoughts grow. I am wearing sexy dresses. Next summer, I will be in my bathing suit ready to go swimming, no matter what my scale tells me my weight is. I am planning my next tattoo which will be a tattoo of a tea cup with the expression “I am enough.” Instead of feeding my negative thoughts, today I choose to feed positive thoughts, starting with this simple one. I am enough.

Hysterectomy and Spina Bifida

I am posting two videos on here about my recent hysterectomy. I hope these will help other folks who have Spina Bifida or who have bladder and bowel issues prepare if they need to have a hysterectomy.

I must warn you the second video may be a ***Medical trigger*** for anyone who has experienced any medical PTSD or medical trauma.

I would love to hear your feedback and your perspective. If you have had a Hysterectomy, what was your experience like?

Getting prepared to have Hysterectomy
Day three after Hysterectomy
***Medical trigger warning***

“Coming Out” About your Disability or Medical Issues with your Lover

I use the term “coming out” not only in referring to when I came out as bisexual but also when I admit to my sexual partners about my medical issues. Just like I hid the fact that I was bisexual for a long time and even tried to deny it to myself, I also tried to hide some of the more embarrassing parts of my disability. I had the same fears in both situations.

Here’s what I have learned over the years regarding coming out. The more freely I share everything about being me (about being Angela) the more accepting I am of myself. I am me. I am enough and I am worthy of love just the way I am. Hiding who I am and always trying to fit was a hell of a lot of work. There was a lot of embarrassment and shame. Now I know who I am and I own it. And I can finally be happy being completely me. So much so that I am comfortable sharing it with all of you.

It took a long time to get to this point. When I was young, I wanted to fit in. I wanted to be like everyone else. I hadn’t come to terms with my disability. I have Spina Bifida which you may hear described as “split spine”. It is a birth defect affecting the area around the spinal cord. The obvious part of my disability is my mobility issues. I have always walked with braces on my legs. I now either walk with crutches or use a mobility scooter. Most people only know about this part of my disability. The part of my disability that I keep hidden is that I have bladder and bowel issues. When I was growing up in school, I would have accidents and I was often the victim of bullying. I often wear either a pad or a diaper depending on the day.

When is the right time to tell your partner about any embarrassing medical issues? Unfortunately, there isn’t a clear cut and dry answer to this question but I hope I can give you some ideas and examples from my experiences to help you in making these decisions.

I believe that how soon and how much you disclose about your health issues really depends on the nature of your relationship. You would share more as your relationship progresses over time and as you build trust with your partner. A casual sex partner may not need to know as much about your medical issues as a long-term love interest. But a casual partner does need to know certain things that are going to impact your sexual experience.

Tip Number One. Safety First. The number one factor you need to consider in how soon to “come out” about your disability or medical issues is safety.

Let’s talk about casual sex partners first. Before I go further, yes, people with disabilities can and do enjoy sex, and yes, we can have casual sex partners just like anyone else. There is nothing wrong with that. I only recommend that you do it safely. If you have a casual sex partner, they may not need to know every detail about your medical issues. However, they will need to know any issues that are going to affect your good time when you get naked with them, or issues that may affect themselves later on.

 Ethically, you should tell a casual partner if you have any STIs (sexually transmitted diseases) before getting intimate so they can make an informed decision if they want to have sex with you and what precautions need to be taken. If you have any pain when you have sex, that is something that is important for a casual sex partner to know. For example, if you are having (PIV) Penis in Vagina sex and you are experiencing pain, tell your partner. Don’t try to wish it away. Don’t get started and think “well he is enjoying it so I won’t say anything.” That sexual experience you are sharing should be enjoyable or both of you, not just one of you. Plus there are a number of other sexual positions you could try, such as doggie style, where he enters the vagina from behind you, that might be more comfortable… And there are other sexual acts that the two of you could enjoy more. Kissing, cuddling, mutual masturbation, oral sex, some people even enjoy kinky sex.

If you are interested in kink (spanking or flogging) but you have certain areas of the body where you are numb, have less sensation, have scars or other sensitive areas, you need to tell your partner to avoid those areas. Communication in Kink is extremely important. That is a topic for another day.  

There may be other medical concerns that could present a safety issue. For example, if you have a seizure disorder, you want to let your partner know that it is possible you could have a seizure. Telling them about it, and what they can do in case you have a seizure is important. Because you never know when that might happen.

Tip Number Two: Know your body! Masturbate! Before you have sex with a partner, you should be having sex with yourself. Masturbation is not a dirty word. This may also be a topic for another day, but for now, all I want to say is when you masturbate, you learn what feels good, and what doesn’t. You may learn about some areas on your body that have little or no feeling. You want to know this before you have sex with a partner so that you can avoid any possible injury.

Tip Number Three: Avoid surprises to avoid anger/resentment.  If you know something happens to your body during sex, admit to it beforehand. My example is squirting or female ejaculation. Female ejaculation is often in response to a g-spot orgasm and it does come from the urethra (just like urine).  If you know that you are a squirter when you have sex, tell a potential partner about it before doing the deed. Some people enjoy being with a woman who squirts, other people do not. I have written another blog here about female ejaculation.

If you are a squirter, you might feel uncomfortable bringing this up to a partner before having sex but it is very important. It might be hard to figure out the exact moment to bring it up. It’s not exactly dinner conversation, but maybe you can bring it up when you get invited back to your partner’s house after dinner. It’s worth it to talk about it so they can make an informed decision if they want to have sex with you and to avoid an angry outburst or any more embarrassment after the deed is done. I have had wonderful experiences where I told a partner about squirting before we had sex and they were excited to be with a squirter…And we went on to have amazing sex rather than, if I hadn’t told them, I would be preoccupied with worry and anxious thoughts such as  “I hope it doesn’t happen, or maybe I should try to not have an orgasm, or will this person hate me afterwards?.”

Tip Four:  Build trust slowly

When you first meet someone, you are trying to put your best foot forward because you want to impress them. You want them to see you at your best. You wear your nicest clothes, makeup, and your sexy lingerie. Over time, what slowly starts to happen? You get comfortable. You start meeting up in tee-shirts and jeans. You forget about the makeup. You slowly start acting more like your everyday self. You start letting them see the real you. As you are building a relationship with someone, you get to know them more and more.

This is where you can start telling them more about your disability or your medical issues. You can start by telling your partners personal things gradually and see how they handle it. Are they respectful of you and your disability? Do they keep your health information private or are they bragging to their friends or others? Do they ask appropriate questions and offer ways to help? Do they encourage you to be independent? These are questions to ask yourself in this relationship to test the waters a bit and see if this partner is a good match for you. Depending on your health, you may have the option to do this slowly or you may have to tell your partner very quickly about issues. Let’s say you are on a first or second date, and you start feeling sick in the stomach, well then, it’s time to tell your partner, “this is a part of my disability”. I am going to talk more about my own personal experience with that later on in this post.

Tip Five: Communication is key in a long term relationship. That includes a discussion about all your medical issues.

In my honest opinion, your long-term partner(s) need to know everything. It is important to them and it is important for you.  I’ll give you two examples of the two longest relationships I have had and how I handled coming out about medical issues.

My first boyfriend (who I later married), knew like everyone else that I had Spina Bifida and I walked differently. He knew a little bit about my bladder and bowel issues. He knew that I would often cancel dates if I had an upset stomach. He knew I went to the bathroom more frequently than other people. He was the first person I had sex with. He was very understanding of my disability and gave me no reason not to trust him and even in that relationship, there were still things I kept hidden for too long. He didn’t know for a long time that I wore diapers. I didn’t tell him until the day we were moving into our new apartment together, that I self- cath (use a catheter) in order to urinate. That’s something I have done that all of my life but I never thought to let him in on that. He was accepting of it. The problem was that I wasn’t. I was the one who had the issue with it. He and I were in a long-term loving relationship, and we were building our lives together but I still kept these things from him. He wasn’t upset about the medical issues. He was upset that I hadn’t confided in him sooner. He felt like I didn’t trust him and he was absolutely right. Being dishonest and keeping information from him was my shortcoming, due to how much shame I was carrying. The shame only grew worse as time went on until I became honest.

TIP Six: If your medical issues are severe enough, you may have to tell your partner before you are emotional ready to. Take a leap of faith and do it anyway.

Now I am a widow. I have been in a new relationship for the past three years with my boyfriend. I came out to him about my medical issues much quicker than I did with my first boyfriend. He learned all about Spina Bifida pretty quickly. This was honestly, mostly because I felt I had to as my health was declining. I remember dealing with gas pains on our second date. We are sitting on the couch cuddling and here I am farting. When you have Spina Bifida, there’s no holding it in, or waiting to get to the bathroom, it just happens. So much for the romance. This guy was pretty awesome about it though. He actually just made a joke about it. We now both deal with a lot of health issues by using humor. He said “Oh good, we got the first fart out of the way. Now I don’t have to worry about it.”

 I really do believe you can cry about your embarrassing medical issue or you can laugh about it. I choose to accept it and laugh about it. Again, I was very lucky that my guy was supportive of me and understanding of my disability. Since we have been together, I have had more changes in my health, more problems with mobility, more problems with my bladder and bowels and more times that I’d like to admit where these issues interrupted me having a sex life. I sometimes would worry that he didn’t sign up for all these problems when he started dating me. However, being with him, I realize that he loves me and he takes really good care of me. He is in this for the long haul. Again, we use humor as a coping strategy. We talk about poop in our house a lot for a middle aged couple.  When we make jokes about it, it somehow makes it seem lighter and takes a lot of the stress off me.  

Tip Seven: Be authentic. Be true to who you are. Don’t wait.

My best advice is to be authentic in every aspect of your life. I am 43 years old and I am still working to be my authentic true self.  There were so many masks that I wore in the past. I was this version of Angela when I was around my family. That version of Angela around my friends. This version of Angela at work. Wearing these masks and keeping these secrets took a lot of energy to keep up.

When I was dating other women, I came out as bisexual to a few close friends. I still hadn’t come out to my family. My family dynamics are very complicated but that is no excuse. My family members were even introduced to the women I was dating, but I would just introduce them as “friends” of mine. 

 Now that I have been in a long term relationship with my boyfriend, I decided it was time to come out to my family about my sexuality because I realized that my sexuality isn’t about the gender of the partner I am with. It is about who I am. I will always be bisexual whether I am in a relationship with a man or a woman. I think I always felt ashamed of myself for not coming out. I felt like it was taking the easy way out because the two long term relationships I had were with men. When I finally did come out with family, I found out that my they had suspected it all along. We think we are doing a good job of hiding our authentic self from those close to us. Most of the time, they see right through it. They may even see it before we admit it to ourselves.

It took me a long time to bring it all together and just be Angela. No matter who I am with. No matter where I am at. I am me. I have learned to accept myself. If I present all my vulnerabilities and other people do not like it, that’s okay too. There is a great saying I learned from a 12 step program. I attend “What other people think of me is none of my business.” I try to live my life by that today. My husband taught me that as well. That is how he lived his life. Like me or hate me. This is who I am. The interesting thing is once I was able to do that, I was able to love myself and care for myself. Then I was able to find myself a new partner who accepts and loves me.

That is what I want for all of you reading this. Whether you are casual dating, or you just want really great sex, or you are single or in a long term relationship(s). Find what makes you happy. Be honest with yourself and honest with others about who you are. Don’t let your fear and your shame take over.  Find the people that are going to love you no matter what. If your past relationships have failed, keep moving forward. Be true to yourself . Accept yourself and love yourself.

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