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Perceptions faced by a parent who uses a wheelchair

WhenTaniaTalksWhenTaniaTalks Member Posts: 4 Connected
edited August 2018 in Guest blogs

Hi, I’m Tania! I’m a first time Mum to 4 month old Elise. I have hypermobile Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome, complex migraine and other related conditions. I’m an ambulatory wheelchair user, who is unable to drive (medical reasons related to photosensitivity). I blog over at When Tania Talks, sharing my life through green tinted glasses. This includes my love of beauty and fashion, our pregnancy journey, parenting topics and other things that take my fancy.

 

When I was asked to write about being a parent with a disability, I was really excited to tell you about the physical difficulties I’ve faced and how we’ve adapted. Like babywearing to get around with a baby and a wheelchair (I’d highly recommend babywearing to all parents, it’s amazing!), having a changing station on each floor of the house, fundraising for a SmartDrive so Elise and I can go out independently, and more.

But then I realised that the biggest difficulty I face as a disabled parent is other people’s perceptions. So, I thought I’d tell you about the train journey that really highlighted this to me.

Elise and I were put onto the train by passenger assistance. The two wheelchair spaces were taken. One by a disabled man, the other by an able woman (by her own admission). The member of staff assisting us asked the able woman to move, so that Elise and I could have the wheelchair space. She happily moved, but a man in the carriage took exception to this. He challenged the member of staff, asking where the able woman was supposed to sit. The member of staff dealt with it well, pointing out that there were plenty of spare seats, but only two wheelchair spaces. This experience left me thinking. Why did this man feel an able woman had more right to a wheelchair space, over a wheelchair user and her baby!? Why did he view Elise and me as being worth less than an able person? Why did he think an able woman was entitled to take one of only two seats suitable and safe for Elise and me to use?

People’s perceptions are the biggest challenge I face when leaving the house with Elise. I’ve had a man shout abuse at me. My wheelchair tipped back in the middle of the road and I hit my head on the concrete. He didn’t come to my aid, or care if Elise was ok. All he cared about was knowing if I’d had an epidural - something that, quite frankly, is none of his business! I’ve been followed by a strange man asking me for money and had a stranger try and take Elise from me. And then there are the ‘well meaning’ people, who come approach us in the street to tell me how I’m “so brave to be out with a baby, in a wheelchair!”

Elise isn’t even five months old yet, and I’ve already experienced five major incidences where people have been inappropriate towards us. 

Not only is it frustrating and at times scary to be treated like I have been, it’s exhausting! Every time I go out, I have to be on my guard in order to protect Elise and myself from strangers who see us as a target because of my wheelchair. 

The thing I find hardest to accept, is that people’s perceptions are so difficult to change. I want Elise to grow up in a world where we can go about our lives without being seen as less than others, a target, a burden or ‘inspirational’ just for leaving the house. I don’t want people to feel sorry for her because I’m ‘in a wheelchair’. Elise won’t miss out on anything because of my physical limitations, but many people are too narrow minded to understand this. 

The thing I find really difficult about is that, of all the challenges to change, other people’s perceptions are the hardest. I can shout from the roof tops, be a positive visible presence within our local community and talk about the difficulties I face on social media. But, the people who’s attitudes need changing, are the very people who wouldn’t be prepared to listen and learn.

There are certainly additional hurdles as a disabled parent, but please don’t let that put you off. I can’t put into words how amazing having a child is. And, while there are people out there who are rude, inconsiderate and narrow minded, there are so many more who are kind, considerate and generous. Like the people who supported our SmartDrive fundraiser. Without them, I wouldn’t be able to leave the house independently with Elise. They’ve allowed me to be the best Mum I can be. 

What difficulties have you experienced with how people perceive you as a disabled person?

Replies

  • TheWheelsOnMumTheWheelsOnMum Member Posts: 4 Connected
    Gosh I'm so sorry for your experiences. I have some of your conditions and I too have faced negative perceptions from the general public. Along with the inspirational speeches which do bug me even though I'm sure people mean well. Or the shock that I am able to have a child .But the fact people seem to want to take your daughter from you is ludicrous! I am shocked and appalled. I'm so sorry you've dealt with that! My daughter is two and I've luckily not experienced this yet. I think Ive been more protective of keeping her in my sight because of my mobility but I thought the danger was in my head, I appreciate you shedding light on this issue. 
    I hope when our daughters are grown they will be in a world where the perceptions are different.
    Please check out my Mummy Blog... https://www.facebook.com/thewheelsonmum/
  • WhenTaniaTalksWhenTaniaTalks Member Posts: 4 Connected
    edited August 2018
    @TheWheelsOnMum Thank you so much! I'm so sorry you've faced similar difficulties. I spoke about when someone tried to take Elise from me and was shocked at how many other people, able and disabled had experienced this too - including my sister. The danger is definitely not in your head, but it is important to remember that the major of people are lovely and want to help, even if they don't always know the best way to show it. But, we are more likely to experience the less than desirable kind of people.
    Yes! I hope the world will be a very different place by the time our daughters are adults. One things for sure, our daughters will grow up to be kind, compassionate people.
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    In the past I have only been a part-time wheelchair user and I certainly got sick and tired of people patronising me. Why do they always assume that a wheelchair user is stuck indoors able to do nothing for themselves?

    I must be thick though because I cannot imagine why they would want to take your baby from you. I know that people don't understand the difference between being unable to walk and being able to still have a life but that one escapes me completely.

    Now that I am housebound and unlikely to get out and about again I understand better why it always meant so much to me and others to be able to do so.

    As for people's attitudes.... I can only seeing that getting worse. This current society is becoming more and more selfish and self-centred. No one seems to care about anything other than themselves and how others like them. It has almost become an obsession and I am sure will keep going downhill because nothing about society now gives people any reason to care about others. My children have proved that to me although the youngest is actually the better of them now. Makes me wonder about whether my girls ever wanted me or just what I could do for them or give them.

    I guess I will always hope that people can be better and, rather stupidly I guess, I always make such a naive assumption about people I meet. You would think that at my age and with all the experience I have I would know better but I don't think I want to be that pessimistic about people no matter how pessimistic about everything else I am, lol!

    Fortunately, despite my condition, people always respect me mostly because of my size and shape. According to my son's GF's I am scary, lol! I know that, over the years, the way I look has kept me from trouble and using sticks doesn't seem to change that perception of strength.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    I used to be oblivious to this issue. After my son was born I vowed to be his advocate until he can speak up for himself. I have been asked to do a presentation for my church family in October about inclusion and Spina Bifida as part of my efforts to raise awareness. I will take questions at the end of the session. We need to raise awareness and destroy the myths perpetuating disability today. 
  • curiousmom1996curiousmom1996 Member - under moderation Posts: 35 Courageous
    This is a topic close to my heart so forgive me rambling on here. Recently I was at the airport with my son and daughter. We were flying to visit my mom and dad for a weekend. Someone assumes we need a wheelchair even though I didn’t need it. I tried to explain to the stranger that I didn’t want a wheelchair. Talking about our diagnosis and disability helps educate children and other people. I love it when people ask me questions about what happened to my son’s legs and why he needs to use a wheelchair. I’ve gotten questions from people whenever I take my kids to the supermarket or a restaurant or the park. Even at the university I attend I have to field questions about what my son has. I usually use them as a opportunity to raise awareness and help break down stereotypes and myths perpetuating disability today. But I don’t always want to respond to the same questions over and over again constantly. 

    Comments and stares are not appropriate. 
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