Filled with despair

Stand by for a toot!

I’ve been working in the disability field with Government Departments, businesses and employers, charities and more for over 20 years but feel an utter failure as the battle for fairness seems harder than ever.

A bit of history: more than quarter of a century ago in 1995, there was the Disability Discrimination Act that placed legal duties on all sorts of bodies to make reasonable adjustments.   In 2010, the Equality Act was more specific about requiring all those public, private and voluntary sector organisations to make information available in alternative, accessible formats.   But we are still banging our heads against this brick wall and the most awful ignorance and prejudice.

This is the sort of stuff I face in just one week:

* One new disability charity wanted a quote for their leaflet.   Not only did they want to define me by my disability rather than my professional activities, they had the temerity to re-write the quote into the most ghastly mediocre and mundane words alongside factual errors.   I stepped back from it all.

* Another charity was trying to set up on-line links between visually impaired people.   It all fell apart as their hierarchy had decreed use of a notoriously inaccessible on-line conferencing system.   Pity their procurement team were so completely ignorant of the law, their beneficiaries, their needs and accessible technology.   One wonders how they manage to operate at all.

* I was asked to take part in some research into disability and employment, but the consent form wasn’t accessible.   It is (nearly) laughable to ask blind people to tick or initial boxes.   Even if I could, how would I know which side of the paper to scan and send back to them?   My solution was to write a statement confirming I’d read everything, gave my consent and an electronic signature.   But not good enough for their ethics committee.   Their solution: they’d send a hard copy.   Did they think I’d miraculously recover my sight?   When ethics are so blinkered about reality, I wonder whether they have any credibility at all?

* An environmental charity was seeking membership and donations.   I would have been interested had they been able to provide information in some accessible way – a simple Word document attached to an e-mail (how quick, simple and cheap is that?).   But all too difficult.   Yet they claim to have an “equality and diversity specialist”.   Pitiful.

* I wanted to get more involved in the sous-chef’s beekeeping but, once again, the national association doesn’t provide information in a format I can read.   Their response: they are “actively” pursuing a solution – it has already taken them 11 years not to succeed so I’m not holding my breath.

Most of this is probably less important and little skin off my nose but restricts how I can take part in the life that others enjoy.

But it becomes more crucial elsewhere.   Take health for an example.   Years ago, the (then) Chief Medical Officer reported that blind people have more health problems than others.   One reason is not difficult to find: the NHS is still appalling at making adjustments for people who can’t see.   Telling our GPs about our needs doesn’t make any difference.   Imagine the fun and games of opening a package with all sorts of paraphernalia.   Eventually, I discover it is a bowel cancer test kit.   I leave it to your imagination as to how blind people can manage to use it, complete any paperwork and return it.

In the midst of this pandemic, resorting to on-line “E-consult” seems to be the only way to get some health care.   How do we do that when we can’t see the screen?

Making information and communications available to everyone isn’t just about equality and fairness, it becomes a matter of life and death.

If you are involved in sending out information: a simple Word attachment without fancy layouts, logos etc is quick and easy – or just paste it into an e-mail.   Done and dusted: legal and fair.

Cath from Blind Veterans contributed the ginger cake featured on the latest on-line live baking session https://youtu.be/myfVZVzVflU

.   We were all rather concerned that the mix was too wet, cooking in the microwave was too risky and that it just wasn’t done.   But her 9-minute cake turned out beautifully.   The trick is to have faith in the timing and accept that it will continue to cook while resting.

It is not a cake that is going to last as it gets somewhat dry after a couple of days.   I treated mine more like a pudding: cooked in a silicone ring mould which left the perfect opening for accompanying pear slices gently cooked with crystallised ginger plus the reduced poaching liquid.

145g milk.

115g butter.

85g syrup and treacle (about 2 tablespoons of each).

85g brown sugar.

115g self-raising flour.

1 teaspoon bicarbonate of soda.

1 teaspoon mixed spice.

2 level tablespoons ground ginger.

Pinch of salt.

2 eggs, beaten.

 

Gently heat the milk, butter, syrup, treacle and sugar until warm and the sugar has dissolved either in a pan or the microwave.

Mix all the dry ingredients in a bowl (I used a hand whisk).

Add the heated ingredients and mix in.

Add the eggs and mix well.

Pour into a microwave-proof ring container that has been lightly buttered and floured.

Cook on High Power for 9 minutes.

The cake should feel barely done: soft and spongy but will get firmer as it rests and cools before turning out.

 

 

 

 

 

 

 

 

NHS catches up with equality legislation.

What do you think:

  • Does your GP or hospital always give you information that you can read and understand?
  • If not, does it mean that you miss out on appointments, treatment, care or health checks?
  • Does your health suffer?

It has taken the NHS 21 years, some significant disasters in care and its own internal Standard to take the law seriously: providing accessible information and communications as originally laid down in the Disability Discrimination Act (1995) and then strengthened by the Equality Act (2010).

Back in 2014, the Chief Medical Officer reported on the poor health outcomes for people with sensory impairments:  in addition to increased prospects of dementia or Alzheimer’s disease, people with blindness or deafness are more likely to have other long-term health conditions, anxiety or stress and have less confidence in managing our health.  I wrote to her and blogged suggesting that our difficulties in getting information from the NHS was probably a significant contributory factor because our contacts with medical care are fewer and probably less successful.

Now the NHS has introduced a new Standard aimed at those involved in health care and adult social care to change how they treat patients, service users, carers and parents, where their information and communication support needs relate to a disability, impairment or sensory loss.

If you have information or communication needs (or look after someone who does):

  • tell your GP practice manager (ideally in writing) and;
  • give them permission to share your requirements with others in the NHS or adult social care (which saves you from repeating it).

Then they should flag your records and take action to meet your needs.

Act Now:  The more of us who ask, the better they should become and then we have more chance of better health in the future.

 

Penny Melville-Brown OBE

Disability Dynamics ltd www.disabilitydynamics.co.uk

Helping disabled people to work since 2000