Blogs & News

Nicola McDowell’s Blog (31) What does independence really mean?

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Nicola McDowell sustained a brain injury aged sixteen, and for the following seventeen years was unaware that she had CVI. Through a series of blogs Nicola shares her experiences with us.

Lately I have been pondering the concept of independence for those of us with CVI and the role of Orientation and Mobility (O&M) skills in developing and maintaining independence. In particular, whether or not a mobility cane has a role to play in this. As a qualified O&M instructor, I understand the importance and need for people who are blind or have low vision to develop the skills needed to help with knowing where one is in space (orientation) and how to move within this space (mobility) and I have recommended the use of a mobility cane to many children that I have worked with. But when it comes to myself, I have been steadfast in my refusal to use a cane, although I have never really been truthful in my reasons for this (even to myself).

Whenever the question of why I don’t use a mobility cane has come up, I generally say, I don’t think it would help me. I am pretty independent and can move around the environment easily without the use of a cane. But recently, a good friend in the CVI community was describing a challenging experience she had had with her vision and how her mobility cane had helped her to navigate back to safety, while at the same time, halting a CVI meltdown in its tracks. I could instantly connect with this story, as I had experienced something similar recently, but when describing my own experience to her, I was somewhat embarrassed to admit that the strategy I had used was to grab onto my husband’s elbow and let him guide me around the challenging environment while I shut my eyes instead of using a mobility cane. This is a strategy I use often and although it is a great O&M strategy in itself, I have now started to worry that it does not really support independence, as I am relying on someone else to guide me.

So how have I got to this place, where I proclaim that I am independent, but yet stubbornly refuse to use a mobility aid that has the potential to enhance my independence? Like everything, it comes back to past experiences. When I first acquired my vision impairment, I had an O&M instructor visit me at school, but because we didn’t realise the full extent of my CVI related visual issues, she didn’t really know how they impacted me within an O&M context. But probably more importantly, she made me look and feel different to my peers just by being there. At a time where I was desperately trying to hide in plain sight and deflect any attention from myself, the last thing I wanted, was to walk around the school with a stranger swinging a white cane back and forth.

Added to this, I was also desperately trying to prove to everyone that I was still the same person that I had been before the brain haemorrhage. A confident, capable teenager who was destined for great things. If I suddenly started walking around with a mobility cane, I was scared that instead of people seeing me as that, I would be pitied and thought of as less capable than my peers. And why did I think that? Because that was the ‘ableist’ mindset I myself had had before I acquired a disability. I didn’t want people to think of me as someone who was less able than a fully sighted person. Of course, I now know that this ablest mindset is discriminatory and disabling in itself. I have met so many independent, extremely capable and extremely confident children and adults who are blind or have low vision and I don’t see them as being disabled at all. They are people first and foremost. So why do I still worry that people will treat me as being more disabled than I am if I use a mobility cane?

Unpacking this a bit more, I realised this is related to society’s perspective of blindness and low vision, and who should be using a mobility cane. A student I have worked with has recently experienced bullying at school for using a mobility cane. She has almost the same visual issues as me and was accused of being ‘fake blind’ for using a mobility cane to help her navigate a very complex school campus. I have also heard from other adults with CVI that they have had people comment to them that they don’t ‘look blind’ so why are they using a mobility cane. I also have strong memories of people staring at me on the few occasions that I have tried a mobility cane during an O&M lesson and although nothing was ever said to me, I could tell they were thinking, why is she pretending to be blind?

So how do we change this ‘ableist’ mindset and allow both children and adults who have CVI to make a decision on whether they should use a mobility cane based on whether or not it will help them, not on what people will think of them? I don’t know if I have the answer to that question, but I do know that I have a role to play in this. I can acknowledge my own ‘ableist’ bias about using the mobility cane, and I can embrace my invisible disability and experiment with using one when next in a challenging environment (luckily I can do this, because as an O&M instructor myself I am actually a very effective and confident mobility cane user!). I can also accept that asking someone to guide me can also be a sign of independence, as I am acknowledging that at that moment, this is the best tool I have in my CVI toolbox, and it is nothing to be ashamed about.

And your role in this? If you happen to see me (or someone with CVI) using a mobility cane, just carry on with your day and don’t give it a moment’s thought. We are just minding our own business, getting on with our day.

Please note: As a vision education and rehabilitation specialist I want to highlight that it is important to understand that not all children and adults with CVI need a mobility cane. There is a range of mobility tools and strategies for people with CVI, and a cane is just one of them. As with everything else with CVI, each child or adult needs to be seen as an individual with their own unique needs. It is also important for people with CVI to have thorough O&M assessments and instruction in using a mobility cane by a practitioner who has experience and good understanding of people who have CVI.

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