Every year as Pride comes to a close on 30 June another, equally important, series of events take over the reins from 1 July – Disability Pride.

Much like Pride, Disability Pride is a month-long celebration of the disabled community, some of the amazing advocates and their tireless work, and a means to continue to push for equality and improved rights for the disabled community across the globe. It isn’t a new thing, the first Disability Pride event was hosted in 1990 to mark the landmark passing of the Americans with Disabilities Act (ADA). It has its own flag with stripes to represent physical disabilities (Red), neurodiversities (Gold), invisible disabilities (White), psychiatric disabilities (Blue), sensory impairments (Green) and remembering those who have been victim of ableist abuse and assault (Charcoal background).The diagonal represents cutting across the barriers that stop us from full participation, integration and inclusion in society.

Despite being almost 35 years old, very few people outside the disabled world have even heard of Disability Pride. We have no parade, no shops offer Disability Discounts or display our flag in solidarity and there is no media coverage to help progress our cause. So many organisations continue to operate as if nothing has changed, quite often doing very little to combat the barriers we face in our daily lives with excuses of “oh sorry, I didn’t realise” or “we looked into it and it isn’t feasible right now” or “budgets are tight and we need to prioritise elsewhere”.

What is there to be proud about being disabled?

From the end of 2020 when my condition really started to impact my life, I have found out more about myself than I otherwise would. I never would have discovered how much I love writing; I wouldn’t have got so actively involved in fundraising; it is unlikely I would have walked anywhere near as far as I have; I wouldn’t have stood up in front of a room of people; I wouldn’t have taken on any campaigning and I definitely would not have been in the running for any awards.

All this and more is because of my sight loss, not despite it.

Is it really that bad for disabled people?

You just have to watch the news or listen to the rhetoric of the last government to understand why change is so desperately needed. When we are vilified as the reason for a spiralling benefits bill it just shows how little people understand the impact disabilities have on our lives. Research by disability charity, Scope, has found that on average, disabled people need an extra £975 a month to cover our extra costs. Imagine earning £15,000 per year and knowing you need at least the same again just to be on par with your abled colleagues? This money is needed to maintain mobility aids, additional energy usage for specialist equipment, additional transport costs among others.

Of course, that assumes we are in work but so many of us face barriers to employment with around 75% of people who are sight impaired or severely sight impaired unable to find paid work and around 1 million working age people with disabilities currently out of work.

Loud and proud?

There’s the phrase “nothing for us without us” and it can be applied to many circumstances when discussing inclusivity and equity. It is persistently pushed for in the LGBTQIA+ community and, as a result, there is much more acceptance now that this policy has to be the way forward. So why does the abled community not realise the importance of this approach when discussing disability?

In the media we are quite often portrayed as the victim, needing to be protected from the big bad world and people are genuinely shocked when they see a confident disabled person. This is most definitely a result of the way we are depicted, sat alone in the dark, moping and just waiting for a saviour to come along and make it all right. It doesn’t help when the charities advocating for us use the “victim agenda” for their own gains. Every guide dog owner I know is strong and fiercely independent and it is, in fact, a fundamental acceptance criteria to be eligible for the waiting list. So when an advertising campaign shows a handler sat looking forlorn waiting for a bus it is not only factually incorrect, but it has the potentially damaging effect of pushing our cause back. I am sure this is not the intention at all but it goes back to the earlier point of nothing for us without us – chances are if some Guide Dog Owners were involved in the process the campaign would look very different.

The forgotten cousin

Some camps say that equality has gone too far with everyone deserving to be given the same opportunities no matter our backgrounds or individual needs. I would argue that there is, in the main, a very good balance and most people are totally accepting no matter who we are. We are generally a tolerant nation but there are always the extremes. The important think is to strive for these extremes to remain on the fringes and not become the norm.

If we are so tolerant, why does it feel like we are the forgotten cousin? I think a big reason for the disparity between commitment and action is money. A few years ago I was talking to a colleague on this subject. He reasoned that, if a group wants to show commitment to something like gender or race equality they will ingrain this obligation into their working practices and can demonstrate by ensuring parity in areas such as pay and recruitment. If they wish to show the same commitment to disability then much more than a few changes to recruitment practices are required, it needs money and time.

For example, if a building does not have wheelchair access then capital is needed to change the fabric of the building and if an application is not screen reader compatible then a project is required needing a feature team and investment to make it so. In a time when budgets are tight and everybody is vying for money, the perceived nice to haves like accessibility get put on the back burner.

And that just is not right.

This is why Disability Pride is so important, this is why our community is shouting to be heard, this is why we must be central to any change affecting us and this is why we cannot be forgotten.