This Little Miggy Stayed Home: Special Needs Spotlight || Shannon

Friday, May 11, 2018

Special Needs Spotlight || Shannon


Miggy: Welcome Shannon! I'm excited to be featuring you today, thank you for participating. You stated in your first email to me that you are an adult with a spinal cord injury. Could you please tell us about the injury--how old were you when it happened and what was the immediate aftermath like--for example was there a long recovery period? How did you first feel when this happened to you? How do you feel now?

Shannon: In 1987 when I was 22 years old I sustained a spinal cord injury to the T11 (thoracic) level. I stayed in an acute care hospital for about a month where I had 2 surgeries to stabilize the spine and was then transferred to the Rusk Institute in New York City for rehabilitation. Recovery period in terms of pain from the surgery was about 1-1/2 months. I have what is called a complete injury and I did not have any recovery of movement or sensation below my injury level. Complete versus incomplete spinal cord injury does not mean the spinal cord is cut in two – that is pretty rare. A bruise or compression is enough to cause complete injury. Incomplete just means there is some degree of residual function/sensation, and how much recovery a person gets varies a lot. So in rehabilitation, I had to do exercises to become strong enough to do everything with the muscle function that I have--use a wheelchair and get in and out of bed/off and on the toilet, etc; get dressed without standing up. I also walked with a swing gait with full leg plastic braces and a walker; this was not using any leg muscles, but swinging from the hip, and was good exercise but not practical in life outside physical therapy sessions, so I did not do this after I left therapy. I stayed in the rehab hospital for 10 months – not because I needed to, but because I had no accessible place to live. They were about to send me to a nursing home but I found a somewhat accessible apartment that I shared with my aunt until I went to college (I had been in college at the time of my accident; I did not return to the same one).

I felt terrible at the time of my accident. I had heard/read about spinal cord injuries and knew that more is affected than walking. It also affects bowel and bladder control and I didn’t know exactly how that was handled. One thing that made me feel better was in the hospital they had a woman with SCI come to see me and she had a child after her injury, which was important to me. In rehab I was very focused on walking again and was not an easy patient. The year after I left rehab I mostly stayed home and that was even worse. Life improved after I had an operation to increase the size of my bladder and no longer had to use a Foley catheter with a urine bag attached to my leg, and I returned to school.

How I feel now--well there are quite a few people who think their SCI made them a better person and would not change it because they have had great experiences because of it. I don’t really feel that way, I do wish it had never happened and I don’t think it made me a different or better person. But I don’t have a choice, I have to live with it and make the best of things--there is still a lot to enjoy in life that has nothing to do with being able to walk. I was a very self conscious person when I was injured and it was very hard for me to feel people were staring and pitying. I still feel kind of self conscious; using a chair is like having a bright red sign on you. I don’t like it when people call attention to it, like yell “watch your back!” or tell everyone to move out of the way because “a wheelchair” is coming. I am good at getting through crowds in the chair, and I like to do it on my own without anyone trying to clear the way. I know how to operate my chair and how much space I need. People tend to not pay attention when they are walking--looking at their phone or walking backwards--or they leap needlessly out of the way when they see me coming and grab their kids. It is hard to be in a situation that most people think is a great tragedy where you can’t have a normal life. Some people even would rather be dead then be me. Really, there are much worse things.


Miggy: Can you please educate us about your disability, what your needs are and how it affects your day-to-day life?

Shannon: As I said, my level of injury is T11, that is paraplegia at a low level so it means I can use all the muscles in my stomach, chest and back. I would like to clear up a common misconception that all quadriplegics can’t move anything above the neck and all paraplegics can’t move anything below the waist. There are various levels of injury depending on what segment of the spinal cord is injured. Many people see a quadriplegic moving his arms and think there is some mistake, but no, at the highest level of complete quadriplegia there is no arm movement and a ventilator, at the lowest level the arms work but the fingers are always affected. With paraplegia, at a higher level there are varying degrees of paralysis of the trunk. Then there are the incomplete injuries that I mentioned, so that you may have a “walking quad.” Anyway, at my level (and really any level of paraplegia) help with dressing, showering, etc is not required. I use a bench in my bathtub to sit on while I shower. I get dressed in my chair, it’s not as hard as people imagine, takes about 5 minutes. Even health care professionals who do not work with SCI patients are often surprised that I don’t need help with these kinds of activities of daily living, but it’s nothing unusual, it is what is expected for my injury level. I use a manual wheelchair and I am lucky that I do not have shoulder problems (many people who use manual chairs for years do). Doing some kinds of housework is more difficult and time consuming, but mostly possible; however, I have always had some kind of help in the house from an aide to help with it. Cooking is not at all difficult.

Although I do not have normal sensation below the injury level, I have neuropathic pain, like a burning, tingling sensation that is very annoying and is hard to treat. I don’t take medications for it as they don’t help much and tend to make you sleepy. It’s like the feeling you get when your hand falls asleep but worse. I have been working full time since 1994, and am not on disability benefits (working while disabled is a big topic by itself, many disabled people want to work but face various difficulties in doing so, including loss of Medicaid if they need home care since other types of insurance don’t usually cover that; there are Medicaid programs for working disabled people in 43 states where you can keep Medicaid at income levels higher than usual Medicaid levels, but this varies by state). I had a baby in 1995 and I did not have a problem caring for my son from a wheelchair. It was not necessary to have a C-section (many people think this). It’s not that different taking care of a baby in a chair, especially if you can use your hands.

My needs mostly revolve around physical accessibility for my wheelchair. When I was injured the ADA was not yet in place, but I don’t have a lot of experience living without it since I didn’t go out that much for the 2 years after my injury. With the ADA the degree of accessibility is really quite good for most things--I can take public transportation, travel, shop, eat out without a lot of trouble. Of course there are historical buildings that have not or could not be made accessible, and businesses that have not come into compliance. Last month I went to a restaurant that had been recently renovated and had an accessible bathroom, but they left on a step to get into the building, which could have really easily been eliminated or replaced with a ramp. There are still corners where curb cuts have not been made and curb cuts that were poorly made/not in good repair. The most difficult access problem is finding a place to live, and visiting others. Most people don’t live in accessible places with accessible bathrooms and I rarely visit anyone. I live in a new, accessible apartment building, but it would not be affordable for a lot of people with disabilities who are not working. Affordable accessible housing is scarce and there are waiting lists for most of it (I am not on those lists; I don’t qualify due to my income).
I mentioned bowel and bladder with SCI--I cannot feel the sensation of needing to go and I can’t make it come out. That does not mean I sit around in diapers and just go in them. For some people with SCI (usually lower injury than me) the bladder and bladder will just fill and fill, but with a lot of us, the bladder will leak after a certain point, and poop would come out when we don’t want it. I have to do a bowel program, where every other day I sit on the toilet and remove the poop manually (yes it’s disgusting and messy but suppositories do not make it come out) until it’s empty. I have to use a catheter (a short one I can carry in a purse) on the toilet 4-6 times a day to empty my bladder and take an antispasmodic medication for my bladder. These things are not foolproof and there are times when I have an accident (mostly the bladder). These are not the only ways to manage SCI bowel and bladder; some people have indwelling catheters or an operation that allows them to catheterize through the belly button; some people do end up getting a colostomy. A lot of people with SCI are more bothered by bowel and bladder problems and nerve pain than not being able to walk, while the general public is very focused on walk, walk, walk. But I do live a pretty normal life and I don’t want “extra credit” or special admiration for that. Sounds like a compliment to say something like that, but it really just makes me feel “other.” Some wheelchair users are really into adapted sports. I’m not … I have never been a sporty person. I do like to swim. A lot of my interests are not affected by SCI at all.

Miggy: As an adult with a disability what are the biggest obstacles you face?

Shannon: Hills can be really difficult especially as I don’t have a power chair, and steps are not possible, not even “but it’s just one step” unless someone helps. 

As I mentioned, accessibility problems especially other people’s homes. I find the dating situation very difficult. I have never been married and I feel like I have missed out on a big area of life. I rarely have a date. I do think it’s because of my disability even though I know many wheelchair users have gotten married and have great relationships. I think my family had low expectations for me in this area as well and said things like “it’s too bad it bothers you.: When I mentioned dating a couple of years after my injury, my mother flat out said no men would be interested. Some people think I could only have a relationship with another person in a wheelchair. My father used to say all the time it would be so nice if I married a blind man. I work at home, long hours, and don’t get out of the house for days at a time. I have online dating profiles and I do show pictures of myself in a wheelchair, and mention it in my profile in what I think is a positive way, and say that I don’t need a caregiver. I don’t get a lot of responses and many of them are from people who are fakers (probably not living in the US). I don’t have a lot of hope about this. I am aware that a lot of people (even most people?) think that wheelchair users can’t have sex (not true, and paralysis does not mean no intercourse--situation for men for SCI is more complex neurologically and I don’t want to speak for them). This misconception is one of the worst things about this injury. I have trouble connecting with people in this way and I also meet few people in “real life.” I also find it hard to make lasting friendships. The most fulfilling thing I have done is be a mom My son is in California in graduate school and I really miss doing all the mom things… “empty nest.”

A big obstacle is really the assumptions that are made about me and other wheelchair users, and it’s really annoying. Most people assume that I don’t work and need a caregiver, that I need help all the time, have to stay home, and that my life is some kind of tragedy and I’m always thinking about my disability. Also people conflate disability and poor health: Not all disabled people have health problems and are visiting the doctor all the time. I do not, I’m really healthy. I wish we could get rid of the idea that disabled people cannot/should not become parents--and that goes for people who have genetic disabilities as well--people are very judgmental about that.

I do not drive. I did get a license long ago but I have never owned a car. My dream place to live is a city where I can take public transport or push the chair everywhere (NYC is like that). I don’t live in such a place, though. I live in a suburban city with limited public transport. I have been taking Uber a lot and most drivers are nice and helpful, but one did refuse me even though I had people with me to pack the chair and told me I need to call a professional ambulette service, and another kept asking me why I don’t have an aide with me. The SUV type cars are really hard for me to get in. I need someone to grab my legs while I lift up with my arms, but that’s really awkward to ask someone to do.

One thing that is not an obstacle for me that a lot of people think is: Opening doors. It’s not at all difficult for me to open them, nor is it hard for me to pick up things I have dropped. I also like to get my own food from a buffet and people always insist on helping me with this. Also high shelves aren’t that big of a deal. In my home, I put things where I can get them. In a store, I can reach 90% of what I want and if I can’t, I can ask an employee or accept an offer of help from another customer. I don’t care about people not in chairs using accessible restrooms… how do I know they don’t have some issue I can’t see? It’s a good idea to not use them if you don’t need them when there is another stall open. I would rather people NOT crouch down while talking to me. I don’t feel inferior or talked down to because I’m sitting down. I know some people like it when others bend down though! It looks very uncomfortable to me. If there’s a chair, grab it, but if not.. I am fine with you standing.


Miggy: I've written a few posts about the problem with pity (here and here) when it comes to having a disabled daughter and how her biggest obstacles aren't her physical limitations, but the limitations that come from society and from people who think of her as "a poor thing" or who "feel bad for her." I'm curious if you agree that accessibility and physical limitations are smaller problems than pity and the way the public sometimes views the disabled community.


Shannon: I do agree. I mentioned some of those assumptions people make above. There are people who find it astounding that I get out of the house, had a baby after my injury (one even thought I must have had artificial insemination), work and dress myself. When you see someone using a wheelchair, you don’t know anything about that person other than they are using a wheelchair. The physical things and inaccessibility can often be worked around but attitudes are really hard to change. It feels terrible to be pitied, and as you have mentioned, there is a really fine line between compassion and pity. A person with a disability may have a really great life. It’s not amazing if a person with a disability smiles, laughs and is having a good time. Thing to remember is that people with disabilities are just people, with good and bad qualities, and our disabilities affect us in different ways. The phrase “in spite of” a person’s disability is used a lot. I don’t do things or act a certain way in spite of or because of my disability. I just am and do. I don’t like being called inspirational just for leaving the house, having a job, and doing other ordinary things. A lot of the inspiration stuff comes from low expectations for people with disabilities.

A word about disability language: I do not like the terms handicapped, wheelchair bound, confined to a wheelchair, also do not like physically challenged, differently abled, etc. They all make me cringe. Handicapped just sounds really old fashioned to me, and I don’t feel “disadvantaged” or burdened down by some weight in a race. Wheelchair bound is still a ubiquitous term, as is confined to a wheelchair. Wheelchairs are not prisons and I am not bound to anything. Disability and wheelchair user are just fine with me if a description is needed. Of course not all disabled people agree on this and some people, disabled and not, think I’m being PC to object to any of those terms.

A really annoying thing that happens to me and a lot of other wheelchair users is that if we are with a person who walks, people automatically tend to talk to that person, even if it’s about me… as in “you can put her over there.” When I am alone, people have no problem engaging me as a person with mental faculties intact, but that all goes away if I am with a standing person. The check is always handed to the other person in a restaurant. So far, though, no waiter has said “what will she have?”

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations? 

Well, there’s something that happens a lot to me, my foot may come off my footrest while I am pushing my chair and sometimes my shoe as well. It’s really embarrassing in public and I have to stop and put my shoe back on and of course people notice. I just want to do it without anyone looking at me or saying anything but people often ask if they can help and I say, no thanks I am just rearranging my feet. I sometimes laugh about my disability/things that arise from it with people I know well (mostly my son) but I’m not crazy about jokes from strangers or people I’ve just met. The wheelchair license and speedy/racing comments are not original and I just don’t find it funny but I feel I have to say haha or something so people don’t think I’m a “bitter cripple.” The other day I had just used a public bathroom stall and I warned the next lady waiting it was a mess in there, then realized after I got a sympathy smile and a “that’s okay” that she thought I meant I had made a mess and could not clean it! I guess I won’t say that again.

Miggy: Lastly, is there anything else you want people to know about you, your life or disability in general? If you could give any advice to mothers with physically disabled children, what would it be?

Using a wheelchair from a younger age, and long term, like most people with SCI, is not like when your elderly relative has to use one, or when you have a temporary injury. I’d like people to understand that. I have mixed feelings about disability simulations… I think it can help people to learn about accessibility issues, but I don’t really think you can push a wheelchair around for one day, often a heavy wheelchair, and know what it’s like to use it on a regular basis. Usually they are exhausted after 1 day – that is not how I feel at the end of the day even if I pushed my chair all over. And I don’t have enormous strong arms like a body builder either – they are just regular arms. I don’t have super skinny atrophied legs either. We don’t all look like the wheelchair using character on Family Guy, with an overdeveloped upper body and small legs, if you’ve ever seen that!

I don’t really feel “different” although I know I am perceived that way. I just feel like a regular person who had an accidental injury and needs to use a wheelchair. I wish people wouldn’t make a big deal out it. I don’t mind talking about spinal cord injuries but I prefer to get to know someone before being asked why I am in a wheelchair (unless it’s a little kid). I also don’t really like talking about what kind of accident I had. That is really personal and people are surprised when I don’t want to reveal it and keep pressing for details. A word about help: Ask first, and accept the answer if it’s no thanks. I’m not being proud or “independent”, I am just refusing help that I don’t need. Never grab a person’s wheelchair and start pushing without asking. This happens to me quite a bit. It’s very startling and can even be dangerous. I know how to push my wheelchair, random stranger may not, even if their mom or somebody used a wheelchair too. I don’t mind being asked if I need help to do something that appears (though it may not be) to be a struggle like pushing up a steep ramp but it does kind of bother me when people ask me if I need help when I am doing such things as looking in the bathroom mirror, sitting there waiting for a bus or just hanging out. I know it’s hard for people to understand, but imagine being asked 25-50 times a day if you need help. I know, some people don’t mind. Other wheelchair users sometimes criticize wheelchair users for refusing help, we are supposed to do it because it makes the other person feel good, or because the next person they try to help might really need it. I mentioned on a disability Facebook group that I will sometimes hurry so I can go through a door before someone helps me, and was told this was an ugly action by another wheelchair user, who said he slows down on purpose so someone can open it. I’d just rather avoid the awkward interaction where the person stands there with their feet in the way and I have to ask them to move them, when I could have been through the door already. There are situations where I will accept an offer of help, it’s not that I am against help. I just want to choose when and how.

I work as a certified tumor registrar and I like to read, draw, travel, cook, take photos with my cell phone and Instagram them. I enjoy researching family history on Ancestry, exploring cities and towns, going to museums and art galleries. I also love fashion, especially a vintage inspired look. Many wheelchair users say they can’t or don’t want to wear dresses, but not me! I would much rather get a compliment on my outfit than a compliment on how well I get around in a wheelchair. I love dogs and cats but don’t have one. I am worried about how I would get a pet to the vet since I don’t have a car. I have a nice family but unfortunately most have moved away or died. I am visiting my son in California this summer and looking forward to it.

I know a lot of parents wonder how to act when their children are curious about a person with an obvious disability. I would advise just to act kind of natural about it, and say yes, some people use wheelchairs to get around, or look different or do things differently, without telling the kid how much help the person must need or making it a “we should be grateful we aren’t like them” moment. If I see a kid staring at me I wave and say hi and they usually say hi back. If they ask me a question I will answer it.

You may have heard of a person with a spinal cord injury who “proved the doctors wrong” and walked again, or read about such a person in the news. This happens--but it’s because the person had some residual movement/sensation, usually but not always soon after injury, enough to walk (and maybe get the bowel/bladder function back). Many who recover a lot will say it’s because of their hard work and not giving up--and they do work hard in physical therapy--but it’s important to remember that when people don’t walk again, it is NOT because they had a negative attitude, or not enough faith, or didn’t work hard, didn’t want it enough. I hear this attitude from people with SCI who recovered as well as from people who know nothing about SCI. It’s just not true. If working hard or wanting it could make me walk, I would have done it already.

It would be great to see some media representation of people with disabilities where it’s not all about their disability. A movie character, for example, who just happens to have a disability, and the movie is not about that, and they don’t want to kill themselves. More disabled people modeling products and clothing.

As for advice to mothers with physically disabled children, it’s a little hard for me to say since I have no experience being a child with a disability or raising one. It really depends on the disability too. I would say encourage their independence to whatever extent possible and not discourage them from pursuing their goals, and treat them like the rest of the kids in the family (with some adaptation for their needs when necessary)… from what I have read, a lot of parents of disabled children are doing a great job with this.
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Shannon, a huge thank you for this wonderful and informative interview. You are absolutely right in that there are so many misconceptions about quadriplegics and paraplegics--I had no idea. Including the fact that you were able to bear and have a son. That is wonderful and again, I admit I was pretty ignorant about childbirth for paraplegics. So thank you! And I appreciate you taking the time to walk through all the things that are said and done to you on a regular basis that I know many of us have said/done to people who use a wheelchair. And while you admit that not everyone in a wheelchair feels the same way you do, I think what is important is that many of us able-bodied people need re-examine the way we behave around people with disabilities, and specifically people who use wheelchairs. When you said, "Imagine being asked 25-50 times a day if you need help." that really hit me. Yes most people are trying to be kind, but a lot of this "kindness" goes back to tired stereotypes about wheelchair users and disabled people in general being helpless and disability itself being a sad/worse/pitable state of being. As you said Shannon, "I don’t really feel “different” although I know I am perceived that way. I just feel like a regular person who had an accidental injury and needs to use a wheelchair." Amen. Thank you again, it is always a treat for us special needs moms to hear from disabled adults as it directly shapes my thinking around disability and how I can best support my daughter. 

As always if you or someone you know would like to participate in the Special Needs Spotlight please email me at thislittlemiggy at gmail dot com. If you've emailed in the past and haven't heard back, feel free to drop me another line. I'm just a one-woman show over here and do my best to stay on top of everything, but inevitably emails slip through the cracks!

Have a fantastic weekend!
XO, 
Miggy

6 comments:

  1. What a thought-provoking interview, her point of view is honest and informative. And her fashion sense is AMAZING!

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    1. Thanks Goodmom42. My son thinks my fashion photos are un mom like so I texted him a little makeup no special clothes photo and he liked that better

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  2. Also want to say that men with SCI can also father biological children, often but not always with reproductive assistance due to problems with ejaculating. Men are 80% of people with SCI. For women fertility and childbirth have nothing to do with the spinal cord. Uterine contractions bring the baby most of the way down without need to push. Some women with SCI do get or choose a Cesarean section, especially higher injuries, due to a complication of SCI called autonomic dysreflexia where blood pressure can go up very high. I don't have this...more common in quadriplegia.

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  3. Shannon sounds awesome! I love her hobbies and those hats are just darn fun! Shannon, a appreciate your willingness to share your knowledge and insights. I also learned a lot, but generally just felt like we got to know her as a person.

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  5. Thank you this was a really informative interview!

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