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!