He Should Be Walking

Earlier this week my 6 year old son Sullivan and I went out to Penge, our hometown. After a few horrible weeks of being predominantly stuck in due to illness, exhaustion, lengthy and traumatic hospital appointments, a breath of Autumn air in our favourite place was much needed.

Penge has somewhat of a questionable reputation depending on who you talk to. We have our problems, like all London boroughs and most of the world actually but the community spirit here is strong and I love it. Just recently, in a horrible act of vandalism, poppies lovingly hand-crafted by members of the community and displayed beautifully by the war memorial were ripped down. Today, Penge partners, cadets and local people banded together to reinstate the poppies in a true and emotional display of community closeness.

I feel a part of the wonderful arts and crafts movement, having run my own jewellery designing business for almost 5 years from Penge and being invested in the schools and independent seasonal craft fairs. We home educate Sullivan due to his additional needs and the local area is full of wonderful things to discover and explore. We shop locally all the time, we join in with community activities and have made many friends with some awesome people working within our churches, library, chemists and shops.

If you live locally, you may have seen Sullivan and I. I am a wheelchair user and Sullivan usually sits on my lap. The reason I’m writing this post today is because somebody decided to exclaim to us as we went past “He should be walking!”.

I rode on, to just outside the mobility centre actually, and then stopped. Today, it cut deep. I have a thick skin from years of snide comments, judgements and assumptions. Sullivan has only had 6 years to build up a defence to this. I chose not to look back or get her attention to explain as I was far too emotional. You may feel it’s not such a big deal being pointed out in a busy high street and commented on by someone who doesn’t know anything about you. You may feel that her comment wasn’t bad at all. She’s probably been brought up without the knowledge of invisible illness and feels voicing her opinion to a stranger is a personal right. She probably didn’t realise the impact her words would have on me or my son. She probably thought she was being funny, that it was just a throwaway joke, or that her years of wisdom and experience with mobility herself warranted telling me that he should be walking.

She’s right. He should be walking.

She doesn’t know why he’s not, though.

Sullivan has Ehlers Danlos Syndrome. His legs don’t work properly because the collagen in his body doesn’t work properly. His joints, ligaments and tendons have to work super hard to stay in place while they move. A lot of the time they don’t stay in place while they move, which causes chronic pain, fatigue, subluxations and dislocations. He is exhausted most of the time from a lack of sleep and lack of pain-free time due to his disabilities. There are times when he can walk and times where he cannot simply push through it and cannot walk. He has an NHS supplied additional needs pushchair awarded to him by a specialist paediatric consultant and physiotherapist due to these issues (which he is outgrowing and to be reviewed soon) but the issue here is that I cannot push him in this as I am a wheelchair user. So when he comes out with me on my own, when he needs it, he comes on to my lap. In the future, he may have to use an NHS supplied electric wheelchair as I do but until then this is our life. We have no other options and this is the only way we can get out for vital time and experiences outside together.

What that woman’s comment today did was make my 6 year old son feel inadequate and sad. I have since explained to him about invisible illness and people’s lack of awareness and tact when it comes to making comments on others/situations we don’t know about. He understands now that it’s not something he should feel bad for or should be carrying on his own shoulders but I feel sad that he had to experience this.

We love our home town and usually experience nothing but positivity and help when it comes to accessibility and our situation but I felt I wanted to write this… not for an explanation of our situation on why he can’t walk a lot, but as a raw snapshot of how it feels when a stranger passes comment (not matter how innocently or jokingly) on things they don’t know about.

The PTB Halloween Trail is on Sullivan’s 7th birthday next Saturday 27th October – a fantastic event where local shops and families get together to enjoy all things trick or treaty. We are once again really looking forward to enjoying the awesome positive community vibes. If you see a scary mummified child with a birthday badge (probably sitting on my lap!) please give us a wave!

7 thoughts on “He Should Be Walking

  1. must have been really hard not to say anything to this moron .
    Bloody good job I wasn’t there otherwise she would have been told by me to shut up and don’t say anything unless you actually know what the problem is

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  2. Oh Julie how can people be so insensitive, he’s a little boy for God’s sake! Do they imagine that he doesn’t want to run and jump like other kids. After the last few horrendous weeks hon I’m sure this throwaway comment hurt like hell but do what you always do and rise above it – she’s nobody and nothing!

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  3. That sounds so tough to deal with, sweetheart, for both you and Sullivan. I know about invisible illness because of my mam’s situation with her MS. She always tries to look her best, put on her makeup and her smile and as a result has had people comment that she doesn’t look ill, or that there can’t be anything wrong with her. That is a woman in her sixties though, who is able to rationalise the comments and brush them off more easily, Sully is a little boy and shouldn’t have to deal with thoughtless and insensitive comments. Thankfully he has a lovely and intelligent mam who can both empathise and support him. Sending you both lots of love xoxo

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  4. I hope he enjoys his birthday and the Halloween ๐ŸŽƒ festivities, people should mind their own business. Unless you are saying something kind donโ€™t say it at all.x

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  5. Probably felt good about themselves speaking her mind. I am guessing she doesnโ€™t have any family or friends with any disability and her whole relationship group are perfectly formed and healthy. Iโ€™m sure Sullivan loves going out with you and by the sounds of things your bond is strong and you are strong for each other. Pay no mind to one persons uninformed opinions. I hope you and Sullivan have a wonderful birthday weekend.

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  6. Well said Julie. Many of us have a tendency to make light hearted comments/conversation with people we don’t know, but I will certainly be more careful in future.
    Best wishes.
    David

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  7. Why do people foist their opinions on other people like it’s their right to comment and judge? I know how it feels to hear this comment after I pushed my 3yo in his pushchair through a busy London station. The woman who let me through the barriers said exactly the same thing. I juat laughed as i was shocked she’d said it. My son is not disabled but the more i thought about it the more it annoyed me as he could have any number of invisible illnesses that meant it was safer for him to be in the pushchair or indeed. I’m so sorry you came into contact with such a judgmental and horrible person. Carry on being the positive person you sound like you are. Best wishes and love to you and Sullivan and I hope he has a fantastic birthday.xx

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